Entry Twenty Nine- The Monitor

The other day my daughter handed me a picture that she had drawn. It was a picture of her, her dad and I sitting in the hot tub together. She captured a rare moment of the three of us spending quality tome together while Oscar was napping. She was explaining all of the details of the picture and when I asked, “what’s that?” and she said, “the monitor.” It was an awakening moment for me. My husband and my parents have commented on my excessive dependence on the monitor, but now my 5 year old has picked up on it too.

I am aware that the monitor has become my security blanket. If I am not physically with Oscar, I am staring at his monitor. I haven’t let myself wean off depending on it. It is too scary for me… it causes too much anxiety. 

Neurologists have assured me that parents are the best “monitor” for a child with epilepsy, “You will just know” she said… The problem is I don’t trust that I will “know”.  I don’t trust that I will react fast enough. So, I am glued to the monitor. 

The last time Oscar had a seizure he was quiet. What I mean is, he wasn’t laughing or crying or making any noise at all. So unless we were watching him, we would never know that he was even having a seizure. I have heard other parents say that their child may scream or cry before or during a seizure which alerts them to the situation. I don’t trust that Oscar would do that now because he has never done it.

I remember when we were first home from the hospital and were adjusting to our new normal, I was scared to sleep. Who will be watching him? I wrote about this in a previous blog “Entry Twenty Four- Night Shift” where we would take shifts being up at night. It wasn’t a sustainable solution. When we eventually graduated from the “Night Shift” I would have to convince myself to surrender to sleep at night. It was challenging then and still is a challenge today, although it has gotten a lot easier.

I have talked about this with my social worker. She agrees that my level of vigilance is not sustainable long term. And I know that once he is of a certain age a monitor will become an invasion of his privacy. I know that I will eventually have to get rid of it… which terrifies me to even think about. 

I am supposed to be working on increasing the length of time that I don’t look at it. Honestly, by the time I get to just a couple of minutes my anxiety has already crept up to a very uncomfortable level. My husband will sometimes get frustrated and take the monitor and say that he will watch it. But then we get into a disagreement because I don’t feel like he is watching it carefully enough. And the truth is, I know that his level of vigilance is different from mine, but is probably more appropriate for Oscar’s current needs.

I had been thinking about writing this post for awhile. The reason why I am sharing it now is not only because of the picture that my daughter drew. We had a power outage and the monitor wasn’t working, so I was sitting in a chair in Oscar’s room after he had fallen asleep monitoring him until the power came back on. As I was sitting there, I started this entry. I know that my vigilance doesn’t appropriately match up with his current need. I know that this is a problem… my problem, I just don’t feel ready to fix it yet.

Just a little side note that we did decide to purchase a back up power supply for future power outages.

Drawn by Olivia: October 2020

Entry Twenty Eight- Feeling Safe

There are ways that you can move on after experiencing trauma, but there are somethings that will never be the same.

I am now recognizing that I am a catastrophist I have always thought that the worst will happen. And thinking about it, I have been this way for a long time. Long before Oscar. I am scared of everything… of the dark, that someone will break into my house when I am home alone, that I will get in a terrible car accident when I am driving in bad weather…when I run alone early in the morning I am scared that I will encounter coyotes or an attacker (I still run though), I am scared that I will acquire another type of cancer, I am scared that something will happen to one of my children. I have always been scared, but why?

I think I never gave enough importance to having had cancer as a young child. I vaulted it up inside and never spoke about it. Many of my newer friends are unaware that I am a cancer survivor. I am now realizing that I had locked this experience away. I now recognize that symptoms of this have spilled out in other ways that were inexplicable, like me being irrationally scared of a situation. Why? Because I lost the luxury of feeling safe. I lost the luxury of thinking that those types of things only happen to other people, because it happened to me.

Then of course I had several traumatic experiences with my own child. From our first inpatient stay at The Hospital for Sick Children after he had experienced his first seizures. To us learning of his rare genetic diagnosis and the onslaught of potential issues. To his second stay at The Hospital for Sick Children due to breakthrough seizures. To his inpatient stay with bronchiolitis when he needed assistance to breathe. These are all experiences that I can move on from and I can (and have) improved my coping skills, but I will never forget them. And I will never have the luxury of feeling safe.

Not every night, but several nights a week when I check on my daughter before I go to bed I think of how lucky we are to raise our children in a country and in a neighborhood that is safe. We don’t have to worry about bombs, access to clean water, access to healthcare or political turmoil. She is safe. My routine is always to go to her room first and then I go to my son’s room… Then there is an emotional shift that happens where I think “will I ever be able to tuck him into bed at night and know that he is safe“? Feeling safe with my son is a luxury that I don’t have right now.

I have spoken a lot about how fortunate I am to have the support system around me including my family doctor and my social worker. I have learned the skill of self-reflection and not only recognize that I feel a certain way but also why I feel that way. I think that everyone is who they are based on their past experiences. My past experiences have taught me that I am not immune to “bad things”.

Now here we are in the middle of the COVID pandemic. I know that some people are really struggling with all of the unknowns associated with this pandemic. Another shut down?School? Treatment? Vaccine? I have come to terms with the concept of the unknown and I am okay with all of the unknowns associated with this pandemic. But there are millions of people and families across the world who have been affected by this virus. If they can be affected, why not my family? Why not one of my kids? If I had a rare ovarian cancer and my son has a rare genetic disease why not COVID?

My husband would say that I have been a bit more “extreme” in my response to the pandemic. I think that I now know why. It is because I have lost the luxury of feeling safe. I have lost the luxury of thinking that bad things only happen to other people. I am not sure if anyone else has those same thoughts, or maybe the same response to the pandemic but were unsure why?

After my cancer was treated, I just moved on with life and rarely looked back. Now that I have had access to professional help I have gotten to know myself better and my feelings about certain things are starting to make sense. I know that not everyone has the same access to these professional services but I would encourage you to find a safe person to share your thoughts and feelings with. It really helped me. Anyways, thank you for reading and stay safe everyone!!

Photo Taken: October 2020

How To Build Your Own Parallel Bars

Thank you Mom and Dad!!!!

Materials needed: (for 72″ in overall length)

  • 4- 10ft pieces of 3/4 inch 40 PVC conduit ($6.47 each CAD)
  • 10-PVC 90degree 3/4″ elbows ($1.10 each CAD)
  • 8- PVC Tees 3/4″ ($1.14 each CAD)
  • 12-feet of 3/4″ wooden dowel inserted into the upper PVC railing to give more rigidity to the top bars
  • 1- can of PVC cement ($6.20 CAD)

Instructions:

  1. Get a measure of the width of your child with his/her arms outstretched at the natural angle needed to comfortably hold onto the upper railing.
  2. Also you will need to establish the height of the upper railing based on the height of your child and the distance from the floor his /her hands need to be to rest on the upper railing. In the case of 2 year old Oscar, the width between the bars was 13 1/2 “ and the height of  the top railing was 16“ from the floor.
  3. Using a hack saw, metre saw, or whatever saw you might have, cut the PVC conduit into 8 three (3) foot sections. 
  4. Cut an additional 2 sections of 3/4 “ PVC conduit measuring in this case           13 1/2 “ ( or your child’s width measurement ).
  5. Cut 6 sections of 3/4 “ PVC conduit measuring in this case 16” ( or your child’s height measurement ).
  6. Cut an additional 6 more 3/4” PVC pieces from the remaining conduit to provide for wider base support ( in our case the remaining conduit allowed for these pieces to be about 6-8” each ).
  7. Using the 3/4” wooden dowel, cut  2  6 foot sections. These will be inserted into the upper conduit rails for added rigidity and support.
  8. We purchased dollar store motivators that could be permanently or adjustably attached to the upper railing. 
  9. Use the pictures attached below to build your custom parallel bars, using the PVC cement to secure the joints. If you want to be able to take the bars apart into two less cumbersome sections, you can simply not glue in the       13 1/2 “ cross pieces in Oscar’s parallel bars.

Entry Twenty Seven- By Two

We so happily celebrated Oscar’s second birthday last week. I have heard that some parents find their child’s birthday a stark reminder of the widening gap between their child and a typically developing child. I am finding this to be true. When your child is young, it is easier to “hide” their delays. As they age, it is much more difficult. Honestly, when we celebrated Oscar’s first birthday we were just so happy he was with us. His second birthday was definitely a reminder of his delays. But I choose to celebrate his abilities.

I am celebrating all of Oscar’s abilities, as small as they may seem to some. I celebrate every time he transitions into sitting, because I know how much practice and patience it took for him to gain that skill. I celebrate watching how fast he crawls because I can remember when he couldn’t pull himself up into all fours. Eventually when he could get into all fours, I would manually move his hands and his knees for him in order to advance forward. I celebrate how well he is doing walking in his walker because I remember how much my back hurt guiding him around in it. And now I am able to celebrate every time he lets go of one of my hands when he is walking to test his balance.

I celebrate when he looks me in the eye and smiles because there were months when he wouldn’t make eye contact. I celebrate when he laughs and when he cries because I remember all of those days when he was silent…I celebrate every little noise he makes.

I celebrate watching him chew and eat because I can still feel the stress as I remember watching him hold food in his mouth for minutes on end, not swallowing. I celebrate watching him pick food up from his highchair tray and put it into his mouth, because I remember when he wouldn’t even bat at an object that was right in front of him. I celebrate watching him drink from a straw because I know how much work it was squeezing water into his mouth with the trainer straw cup.

I celebrate when he helps to push his arm through his sleeve while getting dressed. I celebrate watching him curiously play with his toys and be able to choose which toy he wants to play with instead of me deciding for him. I celebrate watching his little hands turn the page of a book because so many times I grabbed his hand and helped him turn the pages.

I celebrate how I can hold him with one arm because he can now hold himself upright without needing both of my arms for support. I celebrate when he holds on tight to my shoulder as I am carrying him. I celebrate watching him interact with his sister and the special bond they have already developed.

There is so much to celebrate. There is so much that he is able to do today that I wasn’t sure if he would be able to do a year ago. Yet part of me grieves.

I had imagined that by this time my two kids would be running around the backyard together. I had imagined that Oscar would be walking on the trail with us instead of riding in the stroller. I had imagined that Oscar would be saying “mama” and “dada” and would have already come up with a cute nickname for his sister because “Olivia” would still be too difficult for him to say. I had imagined that Oscar would be attending the same outdoor daycare that Olivia had attended. I had imagined that we could be traveling as a family of 4 without a care in the world other than wondering how all 4 of us could manage in a hotel room together.

There are many things that I grieve. But there are many more small things that I am able to celebrate. I try to focus on those things, because those things are so wonderful!

Photo Taken: October 6, 2020

Entry Twenty Six- Two!!

I can’t believe that Oscar is now two! To some, a second birthday may not be a big deal, but to me it means so much. I have learned a lot over the last 2 years. I have learned a lot about things that I wish I didn’t have to know. When Oscar was 8 weeks he was diagnosed with polymicrogyria (he was 4 months old when we learned his genetic diagnosis) and our world shifted.

It has now been almost 2 years from when I asked Oscar’s neurologist, “what can we expect?” the response I got was, “we don’t know.” He told us that a lot of children with Oscar’s diagnosis really struggled, some having multiple seizures a day even with medication. We learned a little bit about the keto diet understanding that this may be in Oscar’s future should his medications fail to work. We received a lot of education at the hospital before we were discharged home. We were educated about Oscar’s daily and rescue seizure medications and when to administer them, we learned what can trigger a seizure, we learned seizure safety including never locking a bathroom door. I wanted to hear “If you are diligent, he will be fine”. I didn’t get that.

We were naturally very concerned about Oscar’s situation and were searching for reassurance that things would be okay. We were told that we would have a good idea of how Oscar will be long term when he turns two. Two!!! But two is such a long ways away.

I have been waiting for Oscar to turn two since he was 8 weeks old. I have wished his infancy away so that two years would pass and I would hopefully gain some reassurance that things would be okay. Two years is a long time to wait. But we are finally here, I can’t believe it. Maybe now you can appreciate why this isn’t just any birthday.

I have learned a lot about epilepsy (and still I feel like I know nothing). Seizures are defined as an electrical disturbance in the brain1 and are very unpredictable. Myelin is an insulating layer that forms around nerves2 and allows nerve impulses to transmit more efficiently. By 2 years old a child’s brain has finished myelinating and once the myelination process is complete, my understanding is that you have a better idea of the child’s long term seizure control.

So here we are. Oscar is now two and hasn’t had a seizure in almost 18months. My husband and I have talked A LOT about Oscar’s medical situation and I can remember my husband saying, “So when Oscar turns two you are all of a sudden going to relax?”…No, now that I am here, I definitely don’t feel that way. Watching your child seize is a traumatic experience. Although I know that Oscar is on a really good path right now, I am also aware that seizures are unpredictable and just because they are controlled today, no one can guarantee me that they will be successfully controlled tomorrow.

I have learned the importance of experience. When we first came home from The Hospital of Sick Children I was TERRIFIED to leave the house with him, TERRIFIED to go to the grocery store (and it is a 5minute drive from my home). I didn’t know what I would do if he had a seizure in the car, or at the store… I was terrified to be alone with him.

Slowly, my confidence in my ability to handle a situation has improved. And that hasn’t just happened because of Oscar’s second birthday, it is because I was determined to get my life back. I have slowly pushed my boundaries and have been lucky enough that when I pushed the boundaries of my comfort zone things have been “okay”. I know that this isn’t the case for everyone in a similar circumstance. Experience has come with the encouragement of my husband, my family, my friends, and my social worker. I did need medication for a period of time and that is okay. I was able to wean off of it, and still be okay. But if I had still needed it or if I need it again in the future that is okay too.

Oscar’s long anticipated second birthday is here. I am so proud of who he has become. Today, he has control over his seizures. He is delayed in all categories of development, but he is slowly making gains and that is all we can ask for. I am still learning how to be present, and to celebrate each day. I am successful doing this most days now… somedays I do still struggle.

These last two years have truly changed my life. Most importantly, I have my precious son. Although I never imagined he would have all of the challenges that he has, he has been a gift to our family. We are fortunate to have an incredible support system both near and far. These last two years have made me really be aware of and appreciate the people we have in our lives. We are also fortunate that my son has such an incredible care team and access to one of the best children’s hospitals in the world, The Hospital for Sick Children in Toronto. We are feeling very grateful today. Happy Birthday Oscar!

To those of you who are waiting… I hope your day comes soon and brings you peace

(One of his tricks is making a “two” with his fingers)

Photo Taken: October 2020

References

Entry Twenty Five- Ear Tubes

At the beginning of the COVID shut down we had a phonecall with Oscar’s Ear Nose and Throat Doctor and she felt as though he may be a candidate for ear tubes. After putting together all of Oscar’s audiology tests, she thought that it was worthwhile trying tubes. Now I know that this may not seem like a big deal, but for us it is. Oscar has a lot of challenges, none of which have a “cure”, but to me ear tubes means that we have a chance at “curing” part of his hearing loss.

Oscar’s hearing loss is considered “mixed” because part of his loss is referred to as “sensorineural” meaning that it involves the brain, but the majority of his hearing loss is a “conductive” loss meaning that there is some dysfunction with how sound enters his ears. Tubes wouldn’t solve the sensorineural portion of his hearing loss, but could solve the conductive portion.

Because of the COVID pandemic, operating room times have been reduced and naturally reserved for those with more serious or urgent needs. Needless to say, I was surprised to get a call from The Hospital For Sick Children wanting to book Oscar’s procedure for this October! I think that I had put this in the back of my mind because I really wasn’t expecting to hear anything until after the COVID pandemic was better controlled.

I was overwhelmed by the phonecall and was eager to share the news. My husband was at work so I called my mom. As soon as I started to tell her I could feel my eyes welling up and I just burst into tears. A while ago I had told my social worker about another experience when I burst into tears. I remember her saying that this was actually a good thing because I am now recognizing my feelings and having an appropriate response. Anyways, I burst into tears.

Why? Because I am hoping for something that will permanently help him? Also the fear of hope, what if this procedure does nothing? Hope is scary for me. I have never been offered anything else to be hopeful for. Neurology will now say how well Oscar is doing but follows that with how “worrisome” his diagnosis is and that we still need to be “diligent”. I have heard the word “promising” a lot. But what does “promising” mean? They are never specific. “Promising” that Oscar can have some sort of a “typical” life? “Promising” that Oscar seems to have avoided the more severe end of his genetic diagnosis? “Promising” isn’t a concrete answer, I am hoping that ear tubes are.

After almost 2 years of treatments and therapies focussed on managing Oscar’s symptoms and delays now there is hope for a fix, at least for a portion of his hearing loss. How could this impact Oscar? It means that he will have better access to sound whenever he is without his hearing aid for example whenever he is around water. I think that this may have a huge safety implication, especially if he has cognitive delays and doesn’t understand potential dangers, at least he could hear better. Even if not for the safety part, it would increase his experience and maybe his cognition if he were able to hear more noises and conversations associated with bath time or a day at the beach.

Hope… it is scary. I do think that I like to keep hope at arms length. It is easier, that way you don’t get let down. I think that once you have gone through the “acceptance” phase of grief, and you have truly accepted your child’s diagnosis and their developmental curve and then someone says “we may have a treatment that could solve one of his problems” you start thinking of what life could be like if this problem were fixed…But I had already thought of what my child’s future was going to be and that abruptly changed. I have finally come to terms with the fact that Oscar’s future isn’t so clear. And I am “okay” with that, but now I am thinking again of what his life could be like if he didn’t have to worry about hearing….

It may seem like I am being overdramatic, but in Oscar’s little world this is important. I know that other parents and families have so many other more urgent and serious medical procedures that they are holding out hope for for their children. Even though I don’t know you, I know that you are out there and I think about you often.

Photo Taken: September 2020

Entry Twenty Four- The Night Shift

I guess sleep has been on my mind since we are now sleep training Oscar. And I can’t help but remember how it all began….

Sleeping is a challenge for any infant. We were lucky that our daughter Olivia slept through the night at 12 weeks old. I remember thinking after Oscar was born “we just have X number of weeks to go” (until the 12week mark, thinking that Oscar would be a good sleeper like Olivia). I was wrong! Oscar has never been a great sleeper.

At 8 weeks old Oscar was put on phenobarbital (a narcotic that made him very drowsy). He would get this medication at 7:30pm and crash immediately after. We would keep him in his clothes so that we could wake him up at 10/11pm, change him into his pajamas and then offer him more milk before going to sleep ourselves.

Then at 4 months old his seizures “broke through” his medication dose and we were back at The Hospital for Sick Children. Eventually we were discharged and Oscar was still seizing about every 2 hours. I remember asking the neurologist, “How am I supposed to sleep?” and she said that it is amazing how parents have an instinct and they “just know” when something is wrong “you are your best baby monitor”. I had no confidence that this was true. I had no confidence that I would instinctively know and wake up if something was wrong. Anyways, we were discharged and Oscar had a seizure on the car ride home. He continued seizing every 2 hours. How were we going to sleep knowing that Oscar was seizing in his crib!? Impossible.

We developed a night shift routine. Luckily, my parents were with us and they stayed up with Oscar until about 1am documenting any seizure activity. Then either my husband or I would get up at 1am and would be with Oscar until maybe 5am and then the other person would get up at 5am for the morning.

At that time I just couldn’t comprehend doing it any other way. I couldn’t understand (not in a judgmental way) but I just couldn’t understand how a parent could sleep let alone sleep with their child in another room knowing that they could be having seizures. I just wasn’t there emotionally. So we did the night shift for about a week and realized that it was not a long term solution. We weren’t “over” the anxiety of bedtime, but we knew that we needed to sleep.

I think it took this experience for me to learn in the truest sense that I had to take care of myself to take care of my family. It would be impossible for us to be up all night and then the next day for me to take care of our kids and for my husband to go to work. We needed to be there for our family and to do this we needed to sleep.

So, we transitioned to putting Oscar in his pack and play right next to my side of the bed (the crib wouldn’t fit). We slept like this for probably 6months. My husband started to suggest that we move him to his crib. “He will be more comfortable on his crib mattress”, “Maybe he will sleep better?”, “Maybe we will sleep better?”. I wasn’t over the trauma, I wasn’t ready. Oscar’s crib was all the way on the other side of our room… What if I didn’t hear him? What if I missed something?

I tried to think logically… the crib wasn’t that far away and I knew that it was my anxiety keeping Oscar in his pack and play. I didn’t want my anxiety to limit Oscar. So eventually I agreed. We started to inch Oscar’s pack and play across the room until he was eventually sleeping in his crib. Oscar slept in his crib in our room for probably another 6months.

The next big step was to get Oscar in his own room. I knew that this was a necessary transition. I had many talks with my social worker about this. It was a huge source of anxiety for me. She suggested that we move the crib closer to the door and to progressively move the crib down the hallway into his room. Again, I tried to put my emotions aside and think logically… if we moved the crib to the door of our room it would be about the same distance away as it’s current location. That wouldn’t “challenge” me. I knew that Oscar sleeping in the hallway was again me putting my anxiety before his comfort. So we elected to rip the bandaid off and put Oscar directly into his own room.

It is amazing to remember that 18months ago I didn’t think that I could ever allow my child with epilepsy to sleep in his own room. I just never thought I could get there. It has taken a lot of soul searching, putting my child’s needs above my own anxiety and therapy to accomplish this. It has been a long, heart wrenching journey but I finally achieved what I thought I never could. Oscar has been sleeping in his own room for quite awhile now. And it has been okay.

Oscar sleeping picture for cuteness! Photo Taken: February 2019

Entry Twenty Three- Falling Asleep

It is so easy for me to see Oscar as a baby. The label “baby” is more appropriate than “toddler” based on his abilities. I need to allow him to be as age appropriate as possible, as he is capable. This includes his bedtime routine and developing good sleep practices, which he currently doesn’t have.

Oscar had a Complex Care Clinic appointment yesterday and the topic of sleep came up. Actually, I brought it up. I know that the sleep routine we have created for Oscar isn’t ideal and that it needs to be changed. I needed encouragement and help coming up with a plan.

Oscar is almost 2 years old and doesn’t know how to put himself to sleep. Why? Because he has never had to learn. We have never given him the opportunity to learn. In our defense, Oscar’s nighttime routine isn’t typical. At 8 weeks old Oscar started taking a medication called Phenobarbital at night to control his seizures. A side effect of this medication is drowsiness and would very rapidly put him to sleep. He also struggled with reflux, so we would cuddle him in an upright position to ensure that the medication went down okay before laying him down in his crib. He no longer has reflux, yet we still do this. We have developed the habit of cuddling him for far too long (like an hour) after he has fallen asleep. Who doesn’t like snuggles? But now he is almost 2 years old.

Oscar was successfully weaned off of Phenobarbital in December 2019 and his seizures are now controlled with a medication called Topiramate. Topiramate also has drowsiness listed as a possible side effect, but to me it doesn’t seem to affect Oscar in the same way. His current bedtime routine is the following; milk, bath, brush teeth, medication at 7:30pm sharp and then we snuggle him until long after he has fallen asleep. Eventually we take him to his room. Oscar has always been put to sleep with medication and therefore has never learned how to put himself to sleep.

Because he can’t put himself to sleep, I have to frequently snuggle him in the middle of his nap because he has woken up for whatever reason and is unable soothe himself back to sleep. This also happens every night at 4am. Either my husband or I will go into his room and snuggle him back to sleep or if we are too tired we end up bringing him into bed with us. Needless to say, he needs to learn this skill.

My other “excuse” for having not sleep trained him earlier was my concern that he wasn’t going to get enough sleep and that that could cause some issues for him. Sleep deprivation was a trigger for seizures that neurology had discussed with us. In my mind, if he doesn’t have a good nap or if he is up in the middle of the night it puts him at risk for having a seizure. What I have learned about my son over the last 23months is that he is resilient. He has been challenged by some of the other seizure triggers including fever and dehydration (after severely vomiting from a now known egg allergy) and has been okay. Oscar’s resilience is starting to settle with me. Maybe that sounds weird. But with all of his health challenges in the past it is so easy to treat him with fragility. He is more resilient than I give him credit for.

Oscar still seems so little to me, but he isn’t. He is growing up. I need to allow him to do the things that he is capable of doing and help him learn how to do the things he struggles with. It is hard watching your child struggle, it is so much easier to do things for them. It is hard letting go, for any parent.

When I look ahead (which I try to avoid) but if I were going to fast forward 20 years, I know that Olivia will have gone to University (not going isn’t an option for her) and she will either still be studying or she will be working and supporting herself. Oscar’s future is a lot tougher to visualize. I can’t. I don’t know who he will be or what he will be capable of. My hopes are that he will be able to support and take care of himself. I don’t know if this is possible for him. But I need to do my best to help him get there, wherever “there” is. Any little bit of independence he can gain, the better. So for right now, what I can do is help him learn the skill of falling sleep by giving him the opportunity to do so.

So, with our pediatrician’s encouragement we are now in the process of developing a bedtime routine and sleep training. Wish us luck!

Photo Taken: July 2019

Entry Twenty Two- Wrong Audience

It happened again last week and I just have to share my thoughts. I am a part of several online support groups, I wouldn’t say that I am an active participant but I do scroll through posts and leave the occasional comment. Last week a soon-to-be mother posted on one of the support groups that she had just learned that her unborn child had the same genetic diagnosis as my son. For reference this was a support group specific to my son’s diagnosis so all of the members have children with the same genetic diagnosis. She asked the group the following question, “What should I do?”

Wait a second… is she asking a support group of parents who all have a child with that same diagnosis whether or not she should terminate her pregnancy? I am definitely pro-choice. I am not judging her question. But to me, it was a strange audience to pose that question to.

I had mixed emotions. She seemed overwhelmed and scared like I was when I first learned of Oscar’s diagnosis. I know what she is feeling and it feels terrible. I could empathize with her. But at the same she is asking a group of parents if they think that she should keep or terminate her pregnancy when she is carrying a child just like theirs. She was overwhelmed by her situation and totally unaware of the situation of others. She doesn’t understand what parents like me have gone through. She doesn’t know what we have done, what we have experienced, the lengths we have gone to for our children. She is assuming that we are all emotionally prepared to not only receive that question but also to answer it. She is totally unaware. I can feel for her, but she can’t feel for me. She just can’t. It isn’ her fault, she just doesn’t “get it”. I was offended by her question, but I also couldn’t help but feel sorry for her.

Many people commented on her post. I am assuming that some people felt the same way that I did. Sad for her, but also a bit upset by her question. I would say that most of the comments were parents stating that yes life has become more challenging but that they wouldn’t change it for the world because their child is so special and loved. I left a very similar comment. How strange it is to justify the value of having your child…..

As I mentioned, I don’t leave comments often, but I had to comment on that post. Of course I had to advocate for the life of a child like my son. This reminds me of my previous post “Entry Twenty One- My Blog” that talks about awareness. I think that if this mother had had any idea of what the parents of the support group had been through, she never would have asked that question to that group of people.

Do I wish things were different for my son, yes! Do I wish that I had a magic wand that I could wave to remove all of his obstacles, yes! When I thought about my life with two kids, was this the life that I imagined…no. My son is the sweetest little soul and I am so grateful that I get to be his mom. Be aware, be kind.

Photo Taken September 2020

Entry Twenty One- My Blog

My husband has been encouraging me to share my blog with the general public. I had wanted to myself, but I haven’t had the courage. Without my knowledge, he did it for me the other day.

There is a book that I have mentioned under my “Self Care” section called “The Body Keeps the Score” written by Bessel Van Der Kolk who is a psychiatrist at Boston University specializing in the study of post-traumatic stress.(I highly recommend this book). As I read, I highlighted several sections that really spoke to me. One of them was the following: “After trauma the world becomes sharply divided between those who know and those who don’t. People who have not shared the traumatic experience cannot be trusted, because they can’t understand it. Sadly, this often includes spouses, children, and co-workers.”

I think the “cannot be trusted” part is a bit extreme. But I do agree that my world has split between the people who “get it” and the people who don’t. In my case the people who “get it” would be any parent raising a child who is in someway different and/or someone who has experienced a traumatic medical event with their child. I am fortunate that my parents “get it”. This allows me to completely trust their advice because they know how it feels to be me and I can relate to how it felt to be them so many years ago. (For a bit more background info check out Entry Four-Hats)

Last August I started writing a letter to my daughter. I had a tremendous amount of guilt because I had been so focussed on Oscar. But I had to be. I wanted her to have something to read when she was older that explained what went on in Oscar’s early years. I wanted her to know my thoughts and feelings. This evolved into me starting this blog. I felt like I had stories to share that could maybe help someone else. I started out by sharing my blog only with close friends and family and later with applicable online support groups. I felt safe sharing with those people. Those people either knew what we had experienced as a family or had experienced something similar.

I would describe myself as being relatively reserved and an introvert. I tend to keep things inside. Perhaps not the description of someone who you may think would be sharing their life’s stories on the internet. It feels safer to do it that way because I can share while hiding behind my computer. And now there is too much that has happened to keep it all inside.

Then… my husband shared it. I am happy that he is proud of what I am doing, but I didn’t feel ready to share it with everyone. Recent movements such as “Black Lives Matter” and “Me Too” have inspired me. Obviously the message that each group is spreading is different but to me the overall blanket message of both movements is to educate people beyond those directly affected by their relative issue. How would it be possible for someone learn of injustices happening to different groups if you didn’t either “belong” to that group or that group for whatever reason didn’t share their struggles?

So, how can I expect people to be compassionate with my children or my family if they are unfamiliar with our past and current struggles? I can’t. For doors to open up for my son, people need to have an awareness of his journey. I don’t know what it feels like to be a minority group, and thankfully I don’t know what it feels like to be a victim of sexual assault. But I do know what it feels like to be a mom of two children one of whom has special needs and chronic medical issues.

I do think that I wanted my new underworld (Check out Entry Nine- Underworld) to be understood by more people other than those who already belonged. I am grateful that my husband shared my blog beyond the people who “get it”. If I can help my son and other children like him by sharing my stories to spread awareness then that is what I will continue to do.

Photo Taken: August 2020