A dear friend of mine who has a child with special needs referred to me as a mighty warrior mom in a text she sent me. She sent this message to me in response to an update I sent her on Courtney. This message didn’t come long after I spoke with my bosses about taking some time off of work. In a moment of self pity I asked myself if I was worthy of being referred to as mighty warrior mom if I had to emotionally admit defeat and take time from work.

I didn’t let the self pity last long. I reminded myself of the oxygen mask analogy. When on a plane, if a flight attendant sees a parent with a child during their safety presentation, they will go up to the parent and remind them that in an emergency to put on their own oxygen mask first then the child’s oxygen mask. But how do you put that oxygen mask on you first when you have little children with so many needs?

I have spent the past two months watching my little girl who can not express how she feels suffer with reoccurring pain. It has been so heartbreaking to watch. I’ve been making phone call after phone call to doctors. I’ve written so many notes and emails to her teachers/therapists that they are probably considering hiring a secretary just to deal with me. During part of this, Alyssa was also having medical issues so add more doctor visits.

I have continued to go to work attempting to teach little kiddos with just as severe needs as Courtney. While working, fielding phone calls, taking any moment I could to make calls to drs when needed, emailing her team and constantly wondering how she was doing. I have felt my performance as a teacher slipping drastically and blamed it on motivation. In all actuality, it has nothing to do with that. Here I thought I was this super hero helping everyone else first but in the end I was not giving them my best because somewhere in these past two months my oxygen mask fell off and I didn’t take the time to put it back on. The analogy couldn’t be more true.

So next week I’m taking the time to put on the oxygen mask. I feel horrible stepping away from my students but in the end, it will benefit them. It will also benefit my family. I’m not staying home to just put my feet up. Unfortunately I think that’s impossible in this stage of life but now that work is off my plate for one week I can fully concentrate on my family and working on figuring out what is going on with Courtney. Thanks to my amazing team at school and a wonderful sub, my students will be in good hands. I can’t thank them all enough!

So let this be a lesson parents…have you taken time to remember to put your oxygen mask on?

Every night I rock Alyssa a little as a part of her bed time routine. She cuddles up in my arms as I rock. I hold her tight as this is our special few minutes together. Guaranteed no interruptions by her big sister who requires so much of my time most days. I hold her so tight in hopes that she knows just how much I love her. I put her in her bed and then rub her back for 2 minutes. After 2 minutes, I tuck her in, say, “good night, I love you,” and blow her kisses as I walk out the door. She blows kisses right back. The past few nights she now says I love you back. She has said it many times before but the past few nights it has just rolled off her tongue and has become a part of our routine.

Every mom loves hearing those 3 words from their child. But there are mom’s out there who say those 3 words to their children every day and never hear it back. I’ve never heard the return “I love you” from Courtney. I know, I know, she tells me she loves me in so many other ways. My favorite line as an autism mom is, “Love Needs No Words”. Courtney tells me I love you at night when I’m cuddling next to her and she scoots a little closer to me. She tells me I love you in her smiles, in her laughter and even in her tears. As true as the statement “love needs no words” is, it still means so much to hear those 3 words back from your child. It’s a little confirmation that amongst all the chaos of a day, amongst those moments where you may have been short fused with your child that they still trust and love you.

Through these last two months of reoccurring UTI’s for my sweet Courtney, I feel doctors have questioned how I truly know it’s a UTI when she’s not telling me it burns to pee. Parents of children who can’t talk have to learn to rely so much on this non-verbal cues. We learn to tune in to those cues. Trust me doctor, I know what she is telling me. Mothers truly know best.

These past two months I’ve wondered if I’m doing everything I possibly can to help her, I’ve worried about the attention it has taken from Alyssa, and more so than ever, I’ve yearned for Courtney to verbally talk to me. I wish she could tell me how she feels and what is hurting. So at night, when Alyssa says “I love you”, I give a sigh of relief. I must be doing something right.

I love you to the moon and back, Courtney and Alyssa!

I kinda have this weird mindset with the medical profession right now and it’s not a positive one. I don’t want to have this mindset. For one, it’s such an important group of people. Honestly, what would we do without them? Second, if it weren’t for the amazing knowledge and expertise, I wouldn’t be alive today. So, please, to all of my readers who are in the medical profession, I really do have the utmost respect for you. But, I am running into a lot of obstacles that are leading me to be very frustrated when it comes to doctors for Courtney.

At first sight, Courtney is your typical 5 year old. Which means when a doctor who doesn’t know her first comes in to the room they start talking to her like she is a typical 5 year old. Completely expected so I always let this exchange (or lack of) happen. I fully expect when it’s our first time with a practice to have to give the full explanation of Courtney. But after a first appointment in a group I guess I kinda expect it would be easily found in her chart that she does have autism, she is non verbal and she is severely effected by this. Am I way off on this? And if I am, so be it, now I know and I will be ready to give a “Courtney explanation” the first couple times we meet with a doctor. So here’s a question. What can parents like me do to help the medical profession be better equipped to work with kiddos like Courtney (and to work with their crazy parents…lol).

Courtney’s ultrasound went well. No blockage or kidney stones. As much as I relieved there wasn’t a bigger problem, I was very frustrated after the appointment. First, it left us without answers. Second, I felt the urologist was not helpful. Our first appointment at this office was actually with the Physician’s Assistant who I that was AWESOME. The ultrasound was with the actual dr. He seemed unaware of her autism and the background of her issue. Did the ultrasound, saw no issues and sent us on our way with suggestions like, “encourage her to empty her bladder and to pee more often”and “have her eat more fiber rich food to help with constipation”. Oh but doctor, if only it was that easy!

I will add it was a long wait and Courtney was beyond done (and so was I) so I did not take the time to ask about some of the more helpful suggestions the PA brought up at our first appointment. Shame on me. But I’m also perplexed why I have to completely recap past visits with others in the practice. Isn’t this in the charts? Again, I don’t want to be frustrated with this profession. Help me understand why this isn’t as easy as reading the charts?

Positive note…Courtney’s last tough day was Friday. We have now had 4 great days in a row. Teachers, therapists and caregivers have reported that Courtney seems herself again. I’m hoping the last round of antibiotics finally got rid of any bacteria buildup. We are still noticing some fear when peeing but she is peeing more regularly again. I am hoping this is behind us now but I can tell you, it is not forgotten. The past 6 weeks have been hell. It will be hard to forget seeing how much pain she was in, hard to forget the bruises it left on her and hard to forget how completely helpless I felt. I am hopeful the preventative antibiotic will keep this from happening again anytime soon. I thank her (and my) amazing support team for all their love and support during this time.

It was five years ago that Joe and I were still trying to adjust to being parents. It was about this time 5 years ago that we were trying to get through Courtney’s colicky days. It was so difficult as brand new parents to watch this tiny human being that you were suppose to be able to care for just cry hours upon hours with absolutely no way to communicate why. Five years later we still have this little girl who is unable to communicate discomfort in any other way but crying.

The past 6 weeks have slightly reminded me of her colicky newborn days. Fortunately it has not been entire evenings of unconsolable crying like it was 5 years ago but it has been frequent episodes of unconsolable crying through out the day. It kills me that she has been suffering on and off for this long and I have not been able to fix it. Several phone calls from school and therapists, several dr appointments, more phone calls to drs than I can count, several urine tests and no answers. Monday we finally have an appointment that will hopefully lead us to some answers. She will have an ultrasound of her kidney. For a typical 5 year old it may not be too bad of a process but for Courtney (and me), it will not be easy. Hopefully we will make it through the test with limited bite marks.

Tonight I cuddled next to Courtney as she fell asleep so thankful for a good weekend after a very tough Friday. Thankful that we found a specialist willing to do more than a urine test. Frustrated that she’s been going through this for 6 weeks and unable to help her. Unsure and worried about what we will find out tomorrow.

So Team Courtney…keep my brave little girl in your thoughts and hope that we get some answers soon.

It was an all smiles type of day today. A type of day we haven’t seen in al most 6 weeks. A day with no painful cries. A day with no biting. A day with no meltdowns. A day that was full of happy chitter chatter and smiles. Today, from beginning to end, she just seemed happy and content.

It was so good to see my little girl again today. I’ll be honest, I was still on edge today. I cautiously enjoyed her happiness as I waited a meltdown. I hate that I spent the day awaiting a meltdown but it was hard not to after the weeks we have had. It was becoming routine for Courtney to have a couple severe meltdowns a day. She had one yesterday so made perfect sense to expect one today. So relieved I was cautious for nothing.

We still are unsure what has been wrong with Courtney. The doctors at the pediatrician’s office ruled out a reoccurring UTI and pretty much sent us on our way. We finally found both a new pediatrician and a urologist that are going to help us figure it out. I was so relieved to find these two doctors. They were so supportive of Courtney’s needs and didn’t make me feel like I was losing my mind. At this point they think the UTI that she did have has lead her to have a fear of urinating because of how painful it was when she had the UTI. So her meltdowns that look like she’s in pain are really her fearfully trying not to pee. Before they say for sure this is what is going n, they want to rule out a few things. Today makes me cautiously hopeful that we are past whatever it was before our questions were answered but if today was just a fluke, we hope to soon have answers. For now, I will enjoy every smile she gives us.

It is said that God only gives you what you can handle. I struggle with that thought process. There are times where I want to ask what lead Him to think I can handle this all. Glad He has so much faith in me, but man, there are days I question if I can really handle it all.

The past 4 weeks have been hard. We have watched Courtney struggle with we think is pain but unsure because of her inability to tell us. We’ve watched her express this pain through biting, scratching and pinching. The bruises on her arms and knees from her biting herself were hard to look at. Words can’t describe how helpless I felt during these episodes especially when they happened in the middle of the night. These past 4 weeks I’ve never hated autism so much and I felt guilty for feeling that way. Autism is our “normal” and for the most part, I’m okay with that. But when you are watching your child suffer with the inability to tell you what is hurting and how you can help, Autism can go to hell. Can I really handle this?

Autism isn’t the only obstacle in our life. There is also Alyssa’s food allergies. Joe said the other night, “I am frustrated with whatever is going on with Courtney, but I am more concerned about Alyssa because that is life or death.” He couldn’t be more right. You don’t truly understand how a food allergy can effect your every day life until you are actually effected by it personally. It involves so much more than making sure your child isn’t eating something with their allergen in it. In seven days, Alyssa had 3 allergic reactions. Minor reactions, but none the less, they were reactions. To what you ask? I have no clue. That is what makes having food allergies hard. No, Alyssa did not eat anything in these situations that she is allergic to. BUT…did she touch something that had tree nut or egg residue on it. For some people, that is all it takes. Think about how many things you touch during the day that someone else has also touched. That is how many times a day someone with food allergies has to worry about having an allergic reaction. That is how many times a day a mom of a child with food allergies worry about their little child having an allergic reaction. Can I really handle this?

The past 4 weeks have left me feeling defeated. I felt like the world was crashing down on me with each phone call from caregivers, teachers and therapists. The past 4 weeks have left me questioning if I can truly handle it. Then today I got the most beautiful pictures from our nanny. They were pictures of the girls playing at the park. Pictures of them smiling and having a ball. Something about Courtney in these pictures looked different. She looked pain free! Maybe things are calming down finally. Maybe we are returning back to our “normal”. Maybe, just maybe, I can handle this.

Three weeks ago I was headed to Michigan with Joe and I got a phone call from Courtney’s school saying she seemed uncomfortable as if maybe she had a UTI. Three weeks ago I cried via texts messages with our nanny as Courtney was catheterized I order to get a urine sample. The past 3 weeks she has even to the dr 3 times, I’ve talked to doctors/nurses so many times that I’m pretty sure they know my phone number by heart. We’ve gotten positive then negative then positive then negative urine tests. She completed 10 days of an antibiotic. In the past 3 weeks I’ve seen my daughter cry in pain and bite herself to the point where she has bruises that look like she’s been abused. I’ve received texts and emails from school and caregivers who have seen the same behaviors. I’ve left work twice and have taken other days off. Yet I sit here with no answers.

What have I learned though?

I’ve learned that being her voice is my most difficult job title of all but learning to be her voice has made me so much stronger.

But the biggest thing I’ve learned through this whole ordeal is the importance of building a network you trust. Courtney requires a network of specialists. Specialists from therapists like speech, feeding to doctors like dentists, gastrointestinal doctors, developmental pediatricians and regular pediatricians. Finding these specialists for a child with special needs is so much more than googling pediatricians in your area.

After the last 3 weeks I have learned that I have not found the right pediatrician for Courtney. This whole ordeal has been beyond frustrating. I can’t even begin to explain what it’s like to watch your daughter experience pain and have no way to express that pain except by inflicting pain on herself and others. Today was the icing on the cake. After spending 90 minutes at the dr trying to get Courtney to pee with no success, it became evident the Dr knew nothing about her because she asked several times if Courtney was saying it burned when peeing. The doctor talked to her as if she was typical. Then we were sent home with a cup for her to pee in with no answers.

So here we are, 3 weeks later and still no idea why she has moments of pain. No idea how to help her and now On the search for a new doctor.

Back in March when we first met Ms. Christine, she made sure to explain that she doesn’t force the children to get on the horse. I knew that was the gentleness Courtney was going to need for horse therapy to be successful. Several sessions later (a few including a lot of tears) I questioned if she would ever get on the horse. I loved spending the time together as a family and I was able to see Courtney’s comfort with Bumble growing so I kept trusting that the day would come.

As I have shared, that day came finally in June and since then, Saturday’s at Hands, Hooves and Hope Ranch have quickly become my family’s favorite time of the week. We’ve gone from wondering if we will get through the session without tears to will she ride Bumble again today to which girl will want to get on first. Courtney’s eagerness today was beautiful! I got her out of the car and she immediately left my side and quickly headed towards the stable. She greeted one of the volunteers with her giggles and was ready to start. It melted my heart after the tough two weeks we’ve had.

Horse therapy isn’t just about getting her comfortable with Bumble now. BOTH girls are working on getting Bumble to go and stop. Ms. Christine is teaching Courtney to either tap Bumble or to verbally say, “go”. Each session it takes less and less to get Courtney to say, “go”. I love hearing her use that sweet little voice of hers to communicate. We didn’t get it n video, but today she even told Bumble to stop!

I am so glad I let myself trust Ms. Christine that this comfort level would eventually for Courtney. Can’t imagine the joy we would have missed out on if I gave up months ago.https://videos.files.wordpress.com/a9mRx1Ji/img_1706-trim.mov