Wow, what a week. What a month… What a year. What a …2 years. This is a rough… rough time in our lives. Is it okay if I put it all out there?
2016 was extremely difficult for us. I couldn’t wait for the new year. I hoped and prayed that the new year would bring with it a rebirth of sorts. I needed everything negative to be behind me… I needed to move on. My son started 2016 with lots of illnesses he got from preschool (fun!) and I was a stress case the entire time. Then in March I had my beautiful daughter. She is absolutely the most beautiful, wonderful thing to come out of 2016. She was a healthy 8 lb 10 oz. I was in love.
Then, the postpartum depression and anxiety really escalated and became unmanageable. I’d never felt so unlike myself. I had this beautiful angel of a baby and I couldn’t enjoy her because of a million different irrational fears. I was out of my mind. The stress hurt. I found my therapist and went back to my psychiatrist and I got medication to get things under control.
Fast forward to May and my son had a reaction to penicillin and had to go to the emergency room via ambulance with a very high fever. He developed erythema multiforme. His rash looked worse than any google images out there. I was terrified. I thought I would fall apart. However, he recovered and things carried on as usual.
In July, my daughter had two bouts of intense vomiting after eating baby cereal. The second time we were at my parents for the 4th of July holiday and my daughter woke up 2 hours after ingesting the oatmeal screaming. She screamed and screamed until she got a bottle, which she promptly vomited all over her aunt. She then became very lethargic and floppy. I called 911 and my 4 month old was carried via ambulance to the emergency room. After hours of tests, failed IVs and blood draws… we were sent home. I consulted her pediatrician that reassured me it was probably just a sensitivity and told me to avoid oats. I knew it my heart it was more. I took her to a pediatric gastroenterologist and then a pediatric allergist. We found out our sweet girl had FPIES.
I cried my eyes out in the allergist’s office. I wondered if it was my fault. Maybe it was all the cookies I ate when I was pregnant. Maybe it was not being able to breastfeed. Why had I been so selfish to have postpartum anxiety and DMER. ? I told myself that I should have fought harder to break through the mental anguish. I should have eaten better. I should have been better for her. The doctor assured me over and over again that this was not my fault. I would tell myself for a long time that it was.
After this experience we went about our lives as normal and made the decision to hold off on solids for my daughter for a few months. In those few months we were preparing for my son to start his second year of preschool. I was nervous that he would get so sick again, but I knew I couldn’t keep him in a bubble forever! So… In September he started his second year of preschool.
By the end of his first week his teacher came to me with concerns. This part of the story is probably going to be the absolute hardest to write– but I’ll try. Long story short, she had concerns that Jack was developmentally delayed. (I had concerns that she was an idiot — but that had nothing to do with Jack. That is a whole other story. ) So… we were referred to a service provided through the local school system to have an evaluation for our son. We took my son to an office downtown and he sat with a clinical psychologist for a while… and I thought he did a great job. Of course, the evaluation showed that he needed an assessment. The assessment determined that he had a developmental delay. I am pretty sure that, had I consented, he would have been diagnosed with autism right there. I did not consent though… for reasons that I will get to in another post. In fact, for more detailed information about all of this feel free to visit my previous blog, The Glimmer.
The months that followed were incredibly difficult. My husband and I spent many nights in bed crying… wondering, researching, asking ourselves how this was possible… etc. I felt like the ultimate failure of a mother. Was this my fault? Is it because I ate poorly, allowed him to have junk food every now and then, let him play on the ipad? I couldn’t stop with the questions. Every therapy session was devoted to this. Through the mental turmoil, Jack was acting out at school. He was being punished, yelled at, ganged up on and treated awfully by his teacher and the other people at the school. I had panic attacks after dropping him off in the mornings. Finally, we made the decision to withdraw him from that toxic place. My beautiful baby had been treated so badly by ignorant, awful people and I didn’t realize it because they were the ones telling me he was a bad child with all of his problems. Everyone was telling me something was “wrong” with my child.
Nothing is wrong with my child. Nothing. He is exactly the way God made him. He is beautiful, bright, hilarious, brilliant and perfect. He loves phones… a lot. He flaps his hands when he is excited. He jumps up and down … a lot. His best friend is his sister. He adores her. He strikes up random conversations with strangers on the street– shakes their hands and says, “hello, how are you?” –He cannot talk to a child. He can’t say hello to them or acknowledge their presence. I don’t know why…and he can’t tell me. These are facts… and these are things we’re figuring out as the days go by. These are the things that go around and around in my head on a loop. I lost many months of seeing all of the wonderful in my son and instead focused on the things that supported the fact that “something was wrong with him.” I will never forgive myself for that… or the people that were persistent in telling me that something was “wrong” with him. Even if there is a delay, or there is autism… or whatever the hell is going on… nothing is wrong with him. Everything is right. He is my love.
As my husband and I dealt with this new reality… we started the new year with putting Jack in a new school and all was well. His new school was amazing! His teachers were perfect. God sent them straight to us. I prayed about it, I asked for an answer and God delivered. His teachers truly loved him. They appreciated the beautiful person that he is. He never got in trouble one day at school. He started making art again. He had progress with students in the classroom. It was a true blessing. He started working with an itinerant teacher and she was so supportive and helped him immensely. He started play therapy and he loves it! I am so grateful for these resources. We stopped focusing on what was “wrong” with Jack and helped him with anything he struggled with. He has overcome SO many fears this year and grown so much. We are so proud of him.
2017 was looking up and then my husband’s father got sick. He had complications with diabetes and was in the hospital in March. He recovered but had to have his leg amputated. Fortunately we got to spend a lot of time with him in the past few months. Our family went most weekends to help out and visit with him. We were very grateful and he pulled through everything and got better. Then, on May 15 we got a devastating call. He was very sick again and in the ICU. We rushed to the hospital and seeing him like that was so painful. I immediately felt regret for every argument we’d ever gotten in (we had a few misunderstandings… we’re both stubborn and hard headed haha). The next few weeks were a true rollercoaster. There were moments of hope and then moments of being let down. It was like this over and over. Finally, on June 2 he left us and we have missed him every moment since.
One thing you should know about my father-in-law is that he helped me get a transcription job at his company– this was amazing for having kids. I could keep the kids and work from home. This saved on daycare. Though it was extremely stressful and hard to deal with at times… it was essential for us financially. There were moments during this job that I struggled with working home alone. I hate being alone. It is torture for me to be alone. I can’t focus, I start to fear things… I struggle. This affected my work several times over the years but I persisted. I’d recently grown to appreciate the work nights after the kids were in bed. I could zone out and think of something other than how hard things had been. Well, the company my father in law and I worked for is full of drama. No need to get into any of it here…but the people are less than kind and it has been difficult to be employed there. However, when I was let go via email this past Thursday I was upset.
We have two kids. Both with “special needs.” Formula is expensive. Therapy is expensive. Appointments are expensive. Everything… is expensive. Though, I didn’t make much money the money I made was essential. So… here we are. Still grieving the loss of my father in law and then let go by the company he devoted many years of his life to in the same week as his memorial service. It adds insult to injury is the expression I think. I’ve been there for 6 years… and now I am here… trying to figure out what I want to do when I grow up… and I’m scared. I’m lost… and I’m scared.
I’m stressed out. These are the biggest events in the past 2 years and I feel… a little beaten down by them. To put it mildly.
Now that I’ve gotten it all out there- I do want to share a few things that have helped me get through the madness:
–Having Claire with no epidural. I felt strong and amazing. I had a goal and I did it.
–Trusting my mama gut so many times and being right.
–Advocating for my kids.
–Getting over my own fears because I needed to be strong for Jack. We have gotten over fears together.
–The love shared in difficult situations. There are no better hugs than the hugs from my husband when he knows I need one. He holds me like he’ll never let me go. These hugs keep me going. They help me breathe.
–Friends. Oh God, how would I have made it this year without my friends? They text everyday, they send cards, come to birthday parties, have a drink, make me laugh, come to my rescue, watch my kids, etc etc.
–Family. My parents have really stepped in and helped me immensely in the past few years. My in-laws have helped us. We would NOT be okay without this help. Our families are true blessings.
–Tickle fights. I’ve noticed that in the past few months, all four of us have gotten in the floor several times and laughed for so long it hurts. These moments are so special. Our phones are away, the TV is off… and we’re just enjoying each other. It is euphoric. It is pure joy shared among 4 people that love each other so much. I thank God every single time for these moments. They are amazing.
We’re going to get through all of these things… and we’re going to do it together. I’m going to be okay. I’m going to try… and fight… and grow and change and learn. I’m going to pray that things start looking up. Lately, I’ve been focusing on the negative because it seems there has been nothing but negative… but I need to change my outlook. Prayers are appreciated.
Have any of you gone through a difficult season in life? How did you cope?