Making Sense

Because of the most recent move Layla has been assigned a new physiotherapist. Today was our first encounter. I was not excited about starting with someone new, yet again, but she is so great. With many years of experience, she seems very knowledgeable and came with a hands on approach. She was able to pinpoint so many things with Layla. Even moments after meeting her. One thing that stood out in our conversations was on vision. I mentioned to her how not long ago I was looking at old videos of Layla from 0-6 months and the first thing I noticed was how wide eyed she looked. Her eyes were big, open and looking around in wonder. I honestly had forgotten that she ever did this. My memory had been focused on other things, I suppose. All I can remember is how everyone always thought she was sleeping (and still does) because she looks down so often, only out of a small slit. I know for sure I didn't notice the nystagmus (eye shaking) until we were almost ready to go home from the long hospital stay. So I feel like something may have actually caused this to develop.  
The therapist was not surprised by my discoveries. She explained that Layla has closed off and gone inside herself to just survive because she had to. Apparently it's quite normal for children that have gone through the sort of trauma Layla has to react in similar ways. Having so many doctors and nurses coming at her, poking and prodding constantly forced Layla to learn to shut down because she lost control of herself. Not getting proper nutrition for a pretty decent period prior didn't help either. Then it became her new normal. Once it became normal, and with her low tone it became hard to even just open her heavy lids.
No one has ever presented that thought to me. But it totally makes sense. Now the hope is with working alongside the physiotherapist and the vision consultant we will be able to get her more excited about keeping them open. Make her new normal keeping them open again. I'm sure it'll be a long road and no easy feat but the fact that it's a possibility makes me very happy.

Being Proud

Last week I read a post by a mother who her lost her son at only a couple weeks old from a genetic disease. She wrote of his first few days when she mourned the loss of what she thought parenthood would be. The thoughts of Why is this happening to me? How sad I would be to have a son with disabilities. How sad I was that my son would die early. She realized how selfish many of her thoughts really were.
It got me thinking. Have I been selfish in my thoughts? Was I a bit embarrassed of Layla? I realized how almost all pictures posted publicly of Layla have just been of her close up beautiful smile. (She does have a beautiful smile.) But I'm not posting real life pictures. I never posted of her month long hospital stay last year. The days in the critical care unit where she was covered in all sorts of tubes. The surgery, the recovery and the countless tests. We have been back to the hospital many times since for emergencies and diagnosis testing. I haven't posted of her hospice stays, therapy appointments or pictures of her g-tube and medications, even though these are a big portion of her day. Don't get me wrong, I think there is a line with how much is shared for the whole world to see. And I do believe having a positive mind helps us get through tough situations. But it's sad that we often only see perfect pictures of people and their families which leads to a false comparison. We wonder why we aren't happy with our lives when we are constantly comparing with the couple who travels the world and seems so in love, or the mom who's hair and makeup is always done while raising 4 beautiful children, or the single friend who has an amazing job and seems to be living the life.. We don't see reality with these people. We don't see the sadness, brokenness or hurt that they carry. I, myself am often guilty of only putting up the best. I've tried to portray Layla as a typical child but the truth is she is not a typical child. Part of me does it so people won't feel sorry or pity our family. I want to seem strong and like we have it all together. But the truth is, we are far from it. 
As these thoughts swirled around my mind I put myself in Layla's shoes. Layla knows no differently than the life she has. She was born this way. She doesn't understand that it's not normal to eat solely by a tube. She doesn't understand what she should be doing at 18 months old. What about how her condition is effecting her life? She has a life, meaning and a purpose, just like we all do. I'm reminded of this quote I saw somewhere in the cyber world:

 Layla has more purpose than just fulfilling your motherhood.

Deep eh? I've been repeating when I start to feel sorry for myself. Because we tried for quite a while, and Aaron had to have surgery to just get pregnant, my mind switched to where I so badly just wanted to be a mom. I had so much time to envision what it was going to be like. My expectations were high. And then they were very disappointed. Life never goes exactly as planned and in our lives it's been far from it. Layla might not be who I expected her to be but she is my daughter. My flesh and blood. My job is not to just be her caretaker. It's to be her biggest advocate, her cheerleader and her mother. I want to encourage and help her reach her highest potential. That's why we continue the testing and fighting for funding and equipment. To make every day count. There are many children who have similar conditions to my daughter who are unsure how long they will be on this earth, and I've seen their families honor them every month. At first I thought it was a bit excessive but you know, why not? How many moms of typical kids write posts every month of the new accomplishments their child has made? It's kind of the same thing. Just a different sort of milestone. 
So I went on facebook and posted a picture of sweet Layla in her standing frame. I actually had it edited and commented on a few times, over a few days before I had the guts to actually post it. Why was I so nervous? I was so scared of what people would think. But I clicked that mouse. I didn't write a sob story but instead a brief post of how big she's getting. You know what the responses were? Way to go Layla! Look at her, getting so big! We're cheering you on! I didn't realize that so many other people would want to encourage her with us. Maybe it's not so bad to be a little more transparent with our reality? Maybe it will even help? Aaron commented about the photo right when he got home from work that day. He has followed my lead by not posting anything that makes her look different. So we talked for hours about her and the thoughts I'd been having. It convicted him aswell. 

Here is a picture of sweet Layla in the pediatric critical care unit, the day after we went to emerge last May. We went in so scared that we might come out without her.

It's hard to even think back on. I remember checking in at the emerge and the woman asked us to sit her on the scale. When I explained how she she couldn't sit the nurse asked Why? 

We don't know why. She never has. We were told she has SMA. 

We laid her on the scale and it came up 12 pounds 8 ounces. I asked her to try again because she was at the doctors two weeks earlier and had weighed 13 lbs 14 oz. (She had been that weight for 3 months.) The nurse tried again and it was still 12 lbs 8 oz. My heart sank. That couldn't be right. There is no way this little body had lost that much weight, that fast. Then the guilt set in. I should've brought her in sooner. 

That's enough of sad reminiscing for today. She's here. She's alive. She's laying across my lap and watching me type away. 

There's that smile. 

A Whole New World

Look at my baby girl.. STANDING! I've always tried to not even imagine her standing because it's depressing to be reminded of the fact that we have been told she will not. Having this frame gives her that capability and it sure is emotional. What I wouldn't give to have her able on her own.. She doesn't even look like the Layla I know. Doesn't she look so tall!? I wonder what she is thinking when in these new positions? What does the world look like to her now? The first few times we put her in the frame she only gave us tears but she is slowly getting used to it. If you look closely you can see that she is just a tiny bit too short for it so we've used chilli pepper coasters to give her that bit of height... whatever works right? Physio is going to try and get some ankle braces to help with support as the weight on her ankles and feet could be part of why she doesn't love it quite yet. 

 We are so fortunate to have the government fund a few assistive devices to help everyday tasks become a little bit easier and possibly help build Layla's muscle tone. For now we have the standing frame and stroller. In the next few weeks we will be getting a high/low seat for around the house as well as some sort of play mat. With these devices I should be able to do a lot more physical and visual exercises with Layla. Though she keeps falling asleep in the stroller so not sure how much learning she'll do in there.. but I can't really complain about that. When the therapists come over most of the exercises require two people. Now with freeing up my hands I will be able to do most of them on my own. Part of the goal as well is to have her be more stimulated in the day so that she might sleep more at night. I'm supposed to wheel her into the kitchen while I cook, bring her into the bathroom while I get ready in the morning etc and hopefully with the upright angle she can see a bit more than her usual laying down position. We're hoping to get her excited about having her eyes open, since it's so much work to open them wide. 

The special equipment is going to take a bit of getting used to. Aaron and I were discussing how having her in a special stroller might mean we will have people state less "Ooh she's sleeping!" I'm unsure of what the new comments might be. I assume that the stroller might speak for itself in a sense and less people will make their funny comments.
Last week one of her doctors said to Aaron and myself "What is new with Layla? What is she doing that she didn't before?" to which I replied "mm... nothing that I can think of." It's awful that I couldn't come up with anything. I expect some comments like that from random people but I was hurt that he of all people would ask that. If it was said in different wording it might not be as bad. In Layla's defence she has been sick for a majority of this winter season, which I'm sure isn't helping with any development. I am extremely thankful that Layla has been able to fight through the sicknesses so far. As her parents, it hasn't been easy taking care of her. Especially functioning on such little amount of sleep. Amazingly, her strength shows when she coughs. Her tone is is so low all the time but when she coughs or sneezes all her limbs flail and she gets out those secretions. Everyone is very happy about that! We spent one night in the hospital last week but that is it this winter. The goal is to avoid hospitals if possible to ward off catching any illnesses. Obviously that is the most common place for them. The last two nights I've gotten a little longer chunks of sleep out of this girl so fingers crossed we are on the up and up! Spring please come soon!

Another round

Spent another Friday in the Medical Day Unit at BC Childrens. Layla's biochemical Doctor applied for funding and was approved to have her participate in GeneDX genetic testing. They will be going through 25,000 genes looking for any abnormalities that may give us a diagnosis. She has already been a part of another team doing a very similar study (but in Canada vs. The States) so I have my fingers crossed that between these two groups something will be found. Something to give us an idea for our daughter's future. They required a large amount of blood again. I hate that that is what they need the most of. Blood work from hypotonic kids is so difficult to get. Because of no muscles tone, they cannot see the vein. They have to take an educated guess, put the needle in and move it around until they (hopefully) find a vein that will give them the blood they need. Might sound easier said than done but it is awful to watch. Layla has had them try for hours before, trying from both arms, both feet, both wrists and her fingers before getting the blood from her head.. Yes her head. Last time they had multiple nurses, an IV specialist and the anesthesiologist try to get the blood with no luck. Then, after all of that, they said we should just go home. I started crying. This was an emotional enough day as is.. Now they wanted to send us home saying today was basically for nothing. *sigh Coming another day will not make it any easier. It's never easy to watch your child be poked and prodded. We've come too far to give up now. We have to get some answers. This was one of the few times that Aaron took the day off work to come. Aaron spoke with the doctor and convinced her to send one more person to try. This time they sent someone from the blood clinic (imagine that) and she got it all! Now there were tears of joy, and lots of snuggles for Layla. That back story was just to give understanding to why I was so excited when this time around that woman from the blood clinic was the first one to come. And guess what, she got it all within the first two pokes. Thank goodness. Still lots of tears from my baby but at least it was for good reason.
After the blood work we prepared for a lumbar puncture. They gave her a numbing cream on her back and a sedative to help keep her calm. It didn't work. Possibly because she is so use to her sedative she takes to go to sleep at night that it is easier for her to fight through it. Or perhaps because they gave it to her just prior to doing the blood work (even though I mentioned how that didn't seem like the smartest timing to give her this medication). This was a sterile procedure so we had a private room. The nurse turned Layla on her side and created a curve in her spine by holding her head and bum close to her. Then the doctor inserted a needle into her lower spine. At first she was upset because there was a little bit of blood coming out with the cerebrospinal fluid which could have compromised the samples and meant she would need to take it out and reinsert but quickly it disappeared and turned into clear liquid drops. She collected in eight different vials about 10-20 drops.
With all the tests completed within the last year and these ones on Friday I feel like they have to find something. They have ruled out so much! The doctors have mentioned time and time again that they believe they give be able to give more answers than we have so far. For this group of tests we have to wait up to 6 months to get the results. So i'm not letting it consume my thoughts in the short term. In the short term we continue living life as we have and take things as they come.  
A couple people have asked me if getting answers will really change how we live. At first I thought not really. Since Layla's been around and especially post  the Ontario hospital stay our life has changed so much already. Right now we have a good routine going. I've got the feeding, meds and appointments down to a science and I even forget once in a while that this isn't the norm. If we got a diagnosis it would change how much effort I put into getting respite and going back to work at some point. It would change my patience level for Layla. It might change how many pictures and videos I take. It would change how often I am away from her. It would change if and when we would consider adopting another child. So yeah it will change a lot of things I suppose.. But change is my middle name, apparently. I have stopped believing that anything will come easy for us. Everything comes with perseverance and a lot of fight. We are forever changed. 

  

Emotional Mush

"Should we stop at Tim Horton's or Starbucks, Kaiti?" Aaron asks.
Simple question. But I could not come up with an answer. My brain was swirling with the pros and cons list of either option and could not make a decision. Well Starbucks is more expensive but I love their green tea lattes (non fat, no foam, sub sugar free vanilla). Aaron like's the drip coffee more at Tim Hortons but the drive through is longer.. It was too hard, too much. Ridiculous I know. But this is seeming to be a normal occurrence lately. I'm sure it's killing Aaron. Between the daily (and nightly) grind with Layla, between my own personal struggles, my husband's, my family's, I can't take on any more. I wish I could. And I do try but i'm full to the brim. The only way I've been able to describe it is that I feel like emotional mush. Helping others feels good. It fills my bucket. If someone trusts me with an issue or situation they are facing I want to help or at least be a listening ear. Being at home 24/7 now, I'm less often in situations where I can be that person for someone. Work used to be the main place where these conversations occurred. But the very hard decision has been made that I will not be going back. Layla's health has taken priority. And my health, by not having to do 4am shifts anymore.. well not out of the house or my pyjamas anyways.
If Layla does pass away at a young age I want to remember as many details as I can. She has knocked away every other priority in my life. That is where all my time, energy, emotions etc are going. Sure, it is ever so hard at times but I do not want to look back and wish I hadn't gone back to work, that I had more time with her. I am very fortunate to have a husband that makes enough money that with some good budgeting we will be able survive with one income for a few years at least. A woman who's daughter passed away 6 months ago (at the very young age of 3 1/2) put up a post a while back about embracing the moments with your "medically fragile" child. About how she would give anything to hear the beeping of her daughters g-tube pump, bi-pap machine, or evening the hospital machines if that would mean her daughter was still here. Man, did that post ever hit me hard. All the moments when I thought that it would be easier if she was just taken from us sooner, thinking it would save my heart from all the aches. No matter how hard it is to have a fragile child, it's better than having them taken away. Once that child is conceived there will always be pain. Whether the child doesn't make it full term, passes away at birth or is given 3 months, 3 years, or 30 years on this earth, it will hurt and take a piece of your heart with them. So it's too late. I will make the choice to find the joys and cherish this sweet girl we have been blessed with. 

Mother daughter bond

I've heard many times of the moment my mom friends have had to drop their one year old off at day care for the first time before they go back to work after a year of spending every day with them. The way their hearts broke when they looked into their child's eyes as they left them with a stranger and a bunch of other kids. That first year of a child's life creates this intense bond between mother and the baby it can be really hard to separate. Makes sense if you think about it. We are so fortunate in Canada to have the government pay us maternity leave while we take care of our infants. 

For me, the first year was the hardest of my life. So many emotions and heartache for both Layla and myself. That joyous bond wasn't there. I had such a rough start I thought motherhood just wasn't for me. I wasn't good at it. The motherhood others shared about seemed foreign. It saddened me that parenthood wasn't at all what we imagined. Instead of bringing Aaron and I together, it was tearing us apart. Then, once we were told we wouldn't have much time with her I didn't allow the bond because I was too scared it would make it hurt more when she was gone. Don't get me wrong, I did love her but there was just something missing. Not sure if I can fully explain it. 

It took until after a year for the connection to take place. Once I saw her health improve, I gained hope. Now at 16 months, it is there. I can feel my heart overwhelm when she looks into my eyes and smiles. I just love her so much. And I never want her to leave. I pray every day that God won't take her from us. I pray that she will prove doctors wrong. That she will amaze us with her progress. Even if it looks different than typical parenthood, that's ok. Not ideal, but ok. 

My "maternity leave" has just begun. And I have lots of catching up to do. 

Trust your Gut

If Layla has taught me anything over her short life thus far, it's that I need to trust my gut more. Not just with her health and needs but also my own. 

When I think back to month 3-6 of Layla's life, I'm reminded of when I knew there was something going on and many people told me "She's fine, children just develop at their own pace". Instead of fighting for more answers I started telling myself I was just another paranoid mother. Apparently I thought that others knew my child better than I did. Even on the day we went to the children's hospital (and ended up staying a month) I kept thinking they were going to send us right back home saying it was all in my head. But my original gut feeling was right! Why didn't I listen to it? Where would we be if I had? I know you can't changed the past and it is what it is but I can't help but wonder. 

I would describe myself as a people pleaser. Wanting to keep everyone happy, never disagree or want to give people a reason to be upset with me, if I can at all avoid it. I've lead myself to believe that my opinion doesn't really matter, my wants and needs are not as important as others. In some ways Layla has continued that thought process because with her high needs, mine can get pushed to the side. But in other ways she has helped me make some small strides. Because she is the most important person in the world to me I want to keep her healthy. And in order to keep her healthy I need to keep myself healthy. This is why (not the sole reason, but one of the subconscious ones) I married Aaron. He helps validate my opinions. Shows me my worth. He has no trouble saying what's on his mind and telling people what for. So often, I have to hold him back from his raw honesty. With Layla there will be times we have to say, we can't hang out with friends because one of them has the flu or we can't go for a walk in the cold winter weather. We have to say that because to our precious daughter the flu can be fatal. There will be times when we just have to say no to events because it's just too late and we've had a long hard week full of appointments.  This is so hard for me because I am a social person and want to hang out with everyone but I have to put Layla and my family's needs first. Some people may not understand and again that is OK. I need to trust my gut. 

Speaking with Layla's physio therapist she advised me that any progress we may see with our daughter will be very slow. Don't expect her to start holding her neck up in a day. Give her lots of time, lots of repetitions and there will certainly be many things that she will never do. We need to accept that. It doesn't mean we don't try though. I'm trying to take this advice for myself. I always try and do too much too fast. You know those people who have to get the groceries in the house in one go, even if it means cutting off all circulation in their fingers and dropping apples down the hallway as they come toward the kitchen? Yeah, that's me. Then I wonder why I have headaches and neck aches all the time. Why do I continue to add to the stress of the things I cannot control? My goal is to start doing things slower.. Take deep breaths in between putting groceries away, grab a glass of water and sip on it (not chug), take a moment in the shower to actually feel the warm water beating on my back.. Stop to smell the roses! If I plan to complete tasks in the day but because of a cranky child who wants to be held I do not complete them.. That's OK. Wait till Aaron gets home, wait until tomorrow. Are these things truly a priority right now? 

There was a study done on a group of seniors in nursing homes on regrets they had for their life and the most common answer was "I wish I had worked less, spent more time with my family." I don't think many would say that they wished they had worked more (and harder and faster). It all comes back to those moments. Enjoy every one one of them because no one knows what tomorrow brings.