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

Maybe I’m making it bigger than it is but I feel 5 years old is a big milestone for a child. It’s the transition out of the toddler stage. It’s the year a child is old enough to go to kindergarten. All those big milestones a little child is suppose to reach have been reached. 5 year olds are starting to make those friends that will become their best friends. They are starting to make those memories that they may actually recall when they are a grown adult.

Working in a preschool with children with special needs, we hear parents talk about us getting their child “caught up” by kindergarten because that is when it really matters. When Courtney was first diagnosed and we were signing up for preschool, joe was saying the same thing as some of these parents. “She’s just going to need a little bit of help and they will have her all ready to be in a regular kindergarten class.” I knew differently.

The big 5 for Courtney is on Wednesday. 5 years old! My little baby girl is 5 years old. But here’s the thing. She may be chronologically 5 years old but in every other sense she is not 5 and for some reason, this year more than others, it is hard to swallow.

Most moms get sentimental on their child’s birthday. Another year has gone by faster than you can imagine. Birthday posts of children usually contain the hashtag #growingtoofast or #slowdown. I agree with those hashtags but I also get emotional because a Birthday also reminds me how far behind she is and also makes me feel like the gap just grew some more. It reminds me what milestones she has not met. It reminds me how steep the mountain still is. Courtney has made so much progress the past few years and I am able to focus mostly on that. Though when it comes to a day where most moms get a little sentimental, having a child with significant needs adds some additional emotions to the day.

As much as I’m an open book when it comes to being an Autism Mom, I’m sometimes hesitant to share the really bad parts. Whether it be a bad day of hers or even a day where I’m just not as emotionally strong. I’m hesitant for several reasons. The main reason is I like to focus on the good. Keeping a positive attitude is the key to living this crazy life. But I also worry that I may sound like I’m looking for people to feel sorry for me and that’s so far from why I share my journey. But if this blog is to truly reflect the journey then maybe it’s important to share the tough moments.

So here it is…

You know that grieving process people go through when they lose a loved one? You go through the same process when having a child with significant needs. Why? Because it’s natural to grieve the loss of what you hoped you would have. Every parent hopes for this perfectly healthy child. The child that you would watch grow through all the “normal” stages of life. When you find out your child will be on a different path because of special needs, that hope dies. Doesn’t mean these parents love their child any less but it still stings.

Like the grieving process when you lose a loved one, it’s different for everyone, the stages don’t go in any order and certain stages will hit you like a ton of bricks even years later.

I can’t pin point why, but I’ve had moments recently where I’ve been teetering between angry and depressed. I said it today to someone, “My daughter has autism, this is my life and it’s daunting sometimes to think this is never going away.”

I can not predict the future but the likelihood of her needing to be completely dependent on us for the rest of our lives is high. Swallow that one. I may never be able to spend a weekend away without wondering who will take care of Courtney. We likely will be juggling this crazy therapy schedule for many years to come. Joe may never be able to walk her down the aisle and Alyssa may never have a niece or nephew on our side of the family. Yep, it’s a grieving process.

Most days I don’t let myself fret about that far in the future because honestly, there’s no way to know for sure and time is too precious to let it bog me down. Heck, I can’t even predict Alyssa’s future. But then there are days where these thoughts smack me in the face. It’s the ugly side of autism. I let these moments hit me, take my time to grieve and then remember how far we have come in this amazing journey.

Before I get messages and phone calls from my parents, I am fine. I am happy and life is good. Just sometimes, autism sucks and It’s healthy for me to share that side too.