Today’s the day I have support

Needless to say, when going through any kind of abnormal/unexpected experience in life (good or bad), support is huge. If you know me, you know that support from my friends and family is undeniable. My sister, for example, spent hours training in all the medical mumbo jumbo along side Bear and I to help when Quinlan came home, my dad has flown up from Florida numerous times just to be with us, my friends are there to take me away on a long weekend to NYC (a trip we’ve been wanting to take for years!) and are a calming voice during an anxiety attack, my brother (and then pregnant) sister-in-law allowed us and any visitors who were kind enough to stop by to take over their house for the week when Quinlan passed (and if you ever need comic relief, I will offer up my 3 year old nephew….he will make anyone smile!), my job has been beyond understanding on the days when I just can’t adult or just need to be home on my couch….text messages, cards, Facebook messages, food, prayers, homemade blankets, toys…the list goes on and on. This was not just after Quinlan passed, but also during the 2 and a half years of hospital stays and stress that comes with having a medically complex child.

The other types of support I’m talking about are not what I would have ever guessed to become so important and necessary during these times. Yet they have kept us afloat.

First I want to talk about the support from the medical world. Obviously you would have hope that the doctors, nurses, and therapists that are taking care of your child or loved one would be supportive, but not to the degree that we have experienced. It’s quite bittersweet to walk into any hospital, nevermind the greatest children’s hospital in the country (I’m going to say in the world, but that’s just my opinion) and have the front desk receptionist know you’re name and what floor Quinlan is on. Or to know the nurses so well that you can let them know when you’re on your way to the ER because he’s having dozens of seizures and find out who is working before even entering the hospital (and of course cross your fingers that at least one from the group of your favorites is on). One of my favorites was having the nurse practitioner from the neuro unit who you talk to regularly and knows you’re coming in, tell her husband, who is an ER nurse, to make sure we get VIP treatment. I will say there was a sense of comfort knowing all these people have your back and will do anything they can for you and your child, but does anyone really want their baby to be such a regular at the hospital that they are so well known. It’s bitter, yet sweet all mixed into one emotion.

We had nurses who worked at both Children’s Hospital and Franciscan Hospital follow us home when he was released from the hospital, picking up shifts whenever they could just to spend time with him. And if they weren’t working, there are a couple nurses who were known to come visit, just to see the little man that they had such a big part in helping to get home. His home nurses that became like family, his early intervention team who stretched him and read to him and helped him make pictures for Bear and I…they are all still a part of our lives and for all that, I am forever grateful.

Another huge support for me has been in my new friend, the “chill pill”. It took me a very long time to even consider taking any kind of medication (I’m the girl who doesn’t even drink caffeine, do you think I was really going to start taking an anxiety med!). Now, I can say it was one of the best decisions I’ve made. When Quinlan passed, I thought I was “ok”, I was getting by, going through the “steps of the grieving process”, as I’ve been told there are. Feeling “ok” was mostly due to the lovely step of grief called “shock”. I’m actually not sure if this is a step in the grieving process, but if it’s not, it should be. Sure I cried and got angry, but I was pretty numb. I didn’t realize just how numb until the shock factor started wearing off and the anxiety started kicking in. I’ve had anxiety in the past so I knew what it could be like, but it was always manageable. This was not.

After a couple months it started getting harder to get up and go to work. I spent many days working from home because I couldn’t stop crying. I couldn’t stay out in public too long without pacing, fidgeting, not being able to stand still. I didn’t think I minded talking about what was going on, but maybe deep down I was afraid of running into someone who would ask me a question and I’d break down. I’m not sure if that was exactly it, but it was something. On April 18, my grandfather passed away, the “John” of Quinlan John. Although it wasn’t out of the blue, it was another loss for my family and that sucked. The one thing that made me feel the slightest bit of comfort was knowing that Bumpa was now able to be with Quinlan. They had such an amazing connection that the thought of them being able to be together once again, did give my family a small sense of relief. Once again, I was “ok”. Until I wasn’t. Bumpa’s memorial service was on Mother’s Day, which was good for me. It was a distraction on my first Mother’s Day without Quinlan. It was a beautiful service, with lots of family and friends, a beautiful tribute to my amazing grandfather. The next day was hard. I had had moments at work before where I needed to get away from my desk, cry, go for a walk, but this day I was tired. It all hit me and I couldn’t adult anymore. I sat in my car and cried. That Friday was another day that adulting was not on my list of things to do that day. The anxiety was too much and it was affecting my daily life. That was the day I took medication for the first time. It was nice to have a doctor and a therapist who both listened to me when I told them I did not want to take medication unless I needed to, and they both understood when I needed to.

Since opening up about taking an antidepressant/anti-anxiety/PTSD medication, I’ve come to realize that not a lot of people talk about this subject. More people then I would have thought have told me that they are, or have been, on similar medication for all types of reasons. I completely respect and understand not wanting to talk about it, and I’m not saying everyone needs to, but to have been through what I’ve been through, damn it, I need the boosted support of serotonin in my life.

The third I’ll mention is my own support for myself. That might sound weird but one of the most important things I’ve been able to do is listen to myself and support what I’m feeling. If I wake up and feel good, go to work and have a good day, then I go with it. If I wake up, get ready for work and feel like I just can’t, then I don’t. It’s taken a while to understand that but I have to. I will break down (and have broken down…see above) if I don’t listen to myself. I’ve had many pamphlets and books and papers given to me over the last 6 months on grief and how to handle it, cope with it, live with it, etc. For some reason, one situation that stood out to me on one of those papers was something called a “grief burst”. You’re feeling ok and going on about your day when out of nowhere the grief hits you and you’re taken aback. The fact that this was an actual thing made me feel like I was grieving “normally” (still hate that word) because it says this is what’s going to happen by the professionals. And you know what it says to do when you have a grief burst….you go with it. So I do. It’s not easy, and I still need to be reminded by others that it’s ok to do. It’s necessary.

A few months back, I went to a support group for bereaved mothers. It was nice to be around other mother’s who felt what I was feeling. But I will say, it was harder then I thought after the fact. I left feeling like I couldn’t wait to go to the next monthly meeting with these amazing women. But the next day I crashed. I was the youngest mother there. It had only been 10 weeks since I lost Quinlan. There were mothers there who had lost their child over 10 years ago and they were still feeling how I was feeling. It was a bit overwhelming, a reality that this feeling will never go away and in 10 years, it will still be here. So at the time, that was not the right support for me. That’s not to say it will not help in the future, but again, I need to support myself and what’s right at the time.

Now, I can’t talk about support without at least mentioning Bear, the yin to my yang. When I’m having a hard day, he completely understands and steps up for me. And when he’s having a rough time, I’m there for him. It’s not easy and trust me when I say it’s not always roses and rainbows but we do pretty well balancing each other out when it comes to support.

While the amazing support for Bear, myself, my family and friends will not make the pain go away for any of us, it helps and sometimes that can be enough to get through the day. There are times when being there for others helps me as well. I like knowing that I can also help others during this craziness. So for anyone who has provided any kind of support to myself, Bear, our parents, grandparents, family, friends….our supporters, I thank you.

đź’šMama Bear 

Today’s the day I start a blog 

So, I’m not quite sure what my plan is for this blog…how often I’ll blog, what I’ll blog about, how I’ll feel about this blog, how to edit a blog, and half the time how to spell “blog”….but I feel like I want to share the story of our little man and our continued journey.

To start off, please note: I’m not normal, I hate the word normal. My family isn’t normal, my husband certainly isn’t normal, and we somehow created the most perfect not normal Brat imaginable. (You’ll soon find out why the word Brat is valid, I promise, I’m not just calling my son a brat for no reason).

The best description I ever heard about Quinlan is that he taught people more about life in his own too short of a life then anyone you’ve ever met. And he did it all without ever having said a word. (If you Google him ‘Quinlan Weekes’ you’ll get some pretty cool info). He was a soul like no other…and pretty damn cute if I do say so myself. I miss him every minute of every day. (Great, here come the tears…this will happen now and then, just ignore, or join in…whichever).

A lot has happened in the last 3 years and 10 months. We got married. We got pregnant. We had a baby. We spent a good amount of time in the hospital with the little man (over 300 days to be exact). We came home and had nurses practically living with us, machines taking over our living room, doctors appointments and hospital visits up the wazoo…..but we also had the most amazing little boy who was OURS. And I wouldn’t change that for anything.

I should say that one thing I know I DO NOT want from this blog is all sadness and tears and whining. We’ve gone through a lot. We have had our share of ups and downs (and sideways and backwards)….but we’ve always had hope (so cheesy I know) but to be honest, it’s gotten me through some pretty horrible times. I have hope that because of Quinlan, no other child will have to endure hundreds of seizures an hour….I have hope that no other parents will have to see their child face what ours has….I have hope that nurses will get the praise they deserve to go through what they go through daily….and most importantly I have hope that another set of brown eyes just like Quinlan’s will be looking up at me again (hopefully sooner then later).

Now, back to the Brat thing….from the moment Quinlan was born, we knew something was going on in his little body. He was born with tense muscle tone. It was a bit tough changing his diaper, he needed lots of stretching (this is where the greatest group of our Early Intervention family comes into play). He didn’t track objects like a newborn would. He had microcephaly (a small head). And eventually we discovered he was having seizures. Fast forward to little over a year later (after respiratory issues, a feeding tube, a tracheostomy, and 10 months in the hospital), Quinlan was diagnosed with a very rare genetic disorder. We discovered he had a mutation on the Brat1 gene (which my husband, Bear, and I are both carriers of….more on that later in the “holy crap I’m really ready to be pregnant again?!” post…which will include IVF with PGD…OMG, WTF!). Mr. Q was the 7th known to be diagnosed, and at the time no other child with his severity of the disorder has made it to their 1st Birthday. Go Q!

A month or so later (November 2015), with much help from the social workers at the hospital and nurses that we didn’t know at the time, but soon became like family, we were able to bring him home.

We endured a few short hospital stays here and there but mostly he was home with us. Everyone loved visiting Quinlan. Sometimes he’d open his eyes for you, sometimes he wouldn’t. If you changed his diaper you were almost guaranteed to get peed on (that was his way of telling you he liked you). But you would always feel something so innocent, non judgmental and pure coming from him. He was amazing!

It’s been 6 months since I’ve been able to get a squeeze on the finger from him, or an excited smile. It’s hard, it’s sad, it’s frustrating and exhausting, it’s surreal, it’s different. Anyone that has lost a child knows….there is a day on the calendar that your life changed forever. We may have started the grieving process, in a way, from the moment we knew there was something going on with Quinlan, but nothing prepares you for never being able to see your child again. It hurts.

I’ve learned you have to put one foot in front of the other and move. It doesn’t matter where but you have to move. People say they don’t know how I do it, and to be honest, I have no fucking clue. Hope, maybe? I’m not sure.

So, here it is. My first attempt at a blog post. Just like everything else in life, let’s see where this takes me. I just hope I spelled “blog” right!

đź’šMama Bear