Dear Typical Moms: Why You Can't Win

Like most things in life, it's difficult to really understand something unless you have experienced it for yourself. This holds more than true when dealing with serious situations like giving birth, losing a loved one, or having a special needs child. You can hear others talk about it, but you can't really "get it" unless it happens to you.

I don't mean for the title of this post to sound harsh. I love my typical mom friends. It's nothing they have done or not done. It's that they haven't experienced raising a child in the same way I have. I can't relate to you either. We're both moms, but that is about as far as it goes. We each had a baby, but everything from that moment on has been completely different.

I know it's awkward for you to know what to say or which questions to ask about my child. Honestly, I wouldn't know what to say to me either. And when you talk about your own children, you run the risk of making me feel bad about what I'm not experiencing as a typical mom. Which you probably do, but it's not your fault.

Do you invite my child to the birthday party knowing she can't play with other kids or join in on any activities? If you do, I might feel bad being reminded of that. If you don't, I might be mad that you left her out just because she's "different". Either reaction is possible depending on the day. But it's not your fault.

For my child's birthday, do you give her an age-appropriate toy that you know is too advanced for her, or a baby toy that you know is probably more on her level? Either way, I'll be reminded how severely delayed she is and unlike her typical peers. But it's not your fault.

I know that you are damned if you do, and damned if you don't. You are set up to fail. But it's okay. All I really care about is that you are still around after all and that you make an effort to be a part of our lives and include us in yours. So you see, you really cannot win. But just remember that I know it's not your fault.

One of those days

It's impossible to ignore the fact that today would have been Ella's first day of kindergarten if she were healthy enough to attend. My news feed on Facebook is flooded with back to school photos. For most parents and children, this is one of the biggest milestones in a child's life.

I know, I know, things could be worse. I'm "lucky" to still have her here after everything she has been through, but some days it makes me angry that the "it could be worse" is that she could be gone; that we're that close to the bottom of the barrel, so to speak.

For the most part, social media has been a positive thing for me. I have been able to connect with hundreds of other special needs moms because of it, and made some real and lasting friendships that would have never happened otherwise.

But the downside is that when everyone is putting their lives on display, we tend to compare ourselves to everyone else. And it's impossible to ignore the missed milestones that continue to come over and over again. First steps. First words. First day of school. Etc., etc., etc. The list will continue to go on.

I don't enjoy having these pity parties, but we're all human and sometimes it's easier to focus on what we don't have rather than count our own blessings. And I honestly don't mind if seeing our struggles makes others appreciate what they do have, because most days are fine.

I try not to dwell on how difficult our life can be. Like anything else, I have honestly gotten used to it for the most part - the frequent hospital stays and the headaches that come along with managing her nursing, prescriptions, supplies and equipment. It's just our life. But some things still smack me in the face and stop me in my tracks, and this is just one of those days.

Trach Week

This week is Global Tracheostomy Tube Awareness Week. Ella has had her trach since she was 6 months old. She was born with a small, fragile airway, mostly due to Pierre Robin Sequence, and was unable to be intubated for surgery as a baby. She was also found to have both central and obstructive apnea and was put on C-PAP through a ventilator at that time. This photo below shows her trach tube clearly. It's held on by velcro ties that must be changed out daily along with care to her neck and the stoma (i.e., the "hole" in her neck) to prevent breakdown of the skin and infection.



There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.

She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.

Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.

Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!

Pseudo Mom

I can't talk to you about when to switch your baby to solid foods. I can't hold a conversation with you about the latest kid's movie or toy. I don't shuttle around from school to ballet lessons and play dates. We don't get invited to birthday parties or build sandcastles on the beach on vacation. In fact, you will rarely see me out in public with my daughter at all. But I am a mom.

I know that I won't ever give her advice on boys and friendships, or help with her homework. I won't have to discipline her and determine grounding sentences. And I won't anticipate her going off to college or getting married, which are all common aspects of being a parent.

When I'm around other moms of typical children, I feel just as out of place as the girl who has no children yet. I have about as much to offer as she does: maybe some anecdotal information I heard about a friend's child or my nephew. I have no first-hand experience on the majority of parenthood topics, and that can feel very awkward like I don't really have a child at all.

But I know being a mom is more than that stuff and deep down at the heart of it we're all the same. We all strive to do what is best for our children and to keep them safe and healthy. Though our day-to-day routines and visions of our children's futures may be very different, a mom's love is universal. I know that she knows I am her mom by the way she looks at me. I know she is telling me that she loves me with her ear-to-ear smile. I know that overwhelming, inexplicable feeling of unconditional love that comes with being a mom, and that is what's most important.