In the eyes of my child

Fatigue, guilt and self-doubt go hand in hand with motherhood. One minute you are rubbing bio oil into a swollen pregnant belly, the next you are panicking about whether the left-overs you ate for lunch were heated well enough to kill any lurking listeria that may threaten to harm your baby. In the days that follow the birth, we’re either hi 5’ing ourselves for an awesome birth or feeling rubbish for that unplanned c section. One day the baby clothes are perfectly washed, folded and organised by colour and size and we’re feeling like “I’ve got this mother gig down pat” that afternoon we’re wearing baby puke and despairing at the dirty dishes wondering why we can’t keep up, but feeling too tired to really give a hoot…

It doesn’t get better and there are plenty of moments as a parent when you just wonder where it all went wrong and EVERY parent can resonate with these feelings. When you’re a mum to a special needs kid, these feelings are amplified. You wonder if you’ve done enough, feel guilty if you spent the day cuddling your baby instead of practicing opening hands. You tally up how many times you’ve done tummy time and google high calorie purees after a bad weigh in. You feel like it is never enough… and if you are like me, not only do you feel like you’ve never done enough with your extra special kiddo, you feel immensely guilty for putting the needs of your other child second. It’s a vicious cycle at times and while I usually give myself a pat on the back and accept the compliments and encouragement of others as meaning I’m doing a pretty good job I do concede to having those moments when I just feel so inadequate that I actually become hopelessly dysfunctional. Every so often I have a day or two when Uncle Panasonic plays Frozen for the 3rd time that day to entertain the 3yr old, the baby spends his day flailing about on the play mat and I sit there clinging to my coffee for dear life wondering when this gets easier and willing myself to pick my socks up and keep going. I tell myself I need the break, the kids will be fine but in my heart I feel like I’ve failed them and self forgiveness isn’t something that comes naturally.

So that was me earlier this week and today I went to Thomas’s therapy session still burdening the guilt of my lazy parenting, wondering if his progress would reflect my temporary parental holiday. I was annoyed at Charlotte (3yr olds can be so difficult to get along with) and again those feelings of self depreciation crept in. I shoved my feels aside and got on with the appointment, reporting on progress, asking questions, smiling in the right places but my heart wasn’t feeling it and I know the therapy team could sense that today was not a good day.

Anyway, to the point… the physio was measuring Thomas up for his first leg braces when Charlotte took the measuring tape and asked if she could measure me. In an effort to include her in the therapy and alleviate her boredom I said yes. As she held the tape against me, I willed her to hurry up. Some moments later she simply said “Mummy, it says you measure perfect”

Myself and the therapy team stopped to let that sink in. My eyes welled up a little and a collective “aww” filled the room. My daughter in her honest, 3yr old innocence could not have possibly planned that nor would she have intended to make a scene. In true 3yr old style she spoke the word that expressed what she felt with no regard of what that meant to me… and it was beautiful.

It has been 5 hours now since the appointment and I am still tearing up. My daughter will never know that this is what her Mummy needed to hear. And yet those small words from her sweet little lips were enough to break me out of the Mother Guilt mode and remind me that to my children, I am everything they need. Their comforter, their favourite toy, their person to “vent” to and the provider of food, clean clothes (well, I try…) and reader of bedtime stories. And while I feel wracked with guilt that I didn’t do enough tummy time or haven’t practiced writing letters with Charlotte all week… THEY are not keeping a tally. To them, I am perfectly what they need even if I don’t always believe it. As long as I measure perfect to them, there is no room for guilt and self-doubt.

Thank you Charlotte for reminding me xo

A Year On

Hello and I am back from a rather long “time out!” I appreciate the new followers that have perused my blog and apologise to the old followers for my absence… but more on that later! We have just celebrated the festive season and in the usual fashion I ate too much, enjoyed gift giving and of course, as a nurse was rostered to work an afternoon shift. This year was an exciting Christmas as it was the first year my eldest child understood the whole concept and it was the very first for my little champion Thomas. As much as I had a wonderful time with my babies, Christmas time also brought with it some relived trauma and sadness as it was Boxing Day last year when I had my first preterm labor scare at just 22 weeks. Until that point, my pregnancy had been fairly run of the mill (with the exception of hyperemesis) but certainly from the point of view of my baby, things were going as well as possible with the 20 week morphology scan showing a perfect, thriving baby. What happened between in those two weeks I will never know, but Boxing Day 2013 at 11pm was the moment I realised I would not be delivering a full term baby. Plenty of women have early labor scares and go on to have perfectly healthy babies, but as I sat on my toilet contracting and wiping a blood tinged mucous plug my heart raced and in that moment “Mother’s Intuition” kicked me harder than the contraction and I suddenly just “knew” that Thomas and I were in trouble. 2 weeks later I was admitted for an epic 7 weeks of hospital bed-rest and little did I know, the start of the most difficult year of my life so far. As the 12 month anniversary of this loomed, my mood hit an all time low and suddenly after months of brewing a “meltdown” I finally fell off my perch temporarily. Suddenly I gave up on therapies for Thomas, I was snappy at my 3 yr old, had an insatiable need to sleep and was doing silly things like pouring half a coffee into my handbag instead of drinking it. My husband noticed my mood and upon gently questioning I admitted that I just felt exhausted and stripped bare of all my emotional and physical resources. I can only say thank you to him as for the most part he endured my temporary episode with patience and understanding and I really believe this helped me to pick myself up, dust off and keep going much sooner than if I’d also been subjected to criticism and attitude. I think many mothers of healthy and thriving children can relate to the sudden “brick wall” but for those of us with extra needs, the pressure is even greater and the brick walls seem to come more often.

I said that this meltdown had been threatening for a number of months, so let me take you back there. 3 months ago Thomas received his official diagnosis – quadreplegic spasticity CP. Essentially this means that all four limbs are affected by stiffness and limitation of movement. Further down the line he will also be diagnosed with a number from 1 to 5 that describes the degree of impairment, 1 being minimal and what they call “non disabling”… 5 being non-ambulant, poor or no use of hands/arms, poor/no head control and core strength and a myriad of other possible issues not limited to seizures, vision impairment, non-verbal and unable to eat orally. 5 is not the number we’re aiming for, however statistically speaking, children with quad CP tend to be in the higher range of classification and as such, have a poorer outlook on future capabilities. I do my very best to be positive and not let this medical way of diagnosis affect my hopes and dreams for Thomas, but at the time of hearing this we were seeing very little progress despite intense efforts to engage and advance Thomas. At just 5 months corrected age, Thomas was already showing signs of early contractures of the hands, had slipped several percentiles BELOW the growth chart, had significant tightness in his arms, legs, hips and back, yet less head control than many newborn babies. He was refusing milk feeds, refusing solids and gagging with any attempt at eating. He had major sensory processing issues and leaving the house was difficult. He had his strengths, mainly that his vision seemed to be developing well and he was smiling, cooing, laughing and enjoying social interactions and had remained as far as we were aware seizure free – all of these things we counted as a major blessing but in the midst of his very obvious physical delays we were feeling incredibly disheartened.

As the weeks and months passed, it also was becoming harder to avoid comments and questions from not just family and friends (whom we have been very open with) but with strangers too. The questions about why he wears hand splints, or questions about his age vs development were getting harder to deflect. I was extremely taken aback one day when a woman straight out asked me what syndrome my child had. In some ways, the directness was actually refreshing as she didn’t beat around the bush or try to fish for the answers, she simply spoke her mind making it much easier for me to say “he has cerebral palsy” and that was that. But that moment also made me realise that he no longer just passes as a little baby, it is now becoming clear that strangers will notice… and comment. In time I will grow resistant to their stares and curiosity but right now, it hurts like hell and I miss the days when a comment from a stranger was simply to congratulate me on my beautiful baby. Around this time, several of my friends with babies of the same age were starting to share their excitement at the leaps and bounds their babies were making – I watched with sadness as they chased after sitting and crawling babies, took objects out of curious hands and delighted in messy food covered faces. I smiled and adored their baby as a good friend should, but my heart broke as my own baby laid in my arms or on a playmat, unable to move or reach for toys, struggled to hold his head up and kept his hands tightly fisted. I wished for him to have chubby legs and not the permanently bent legs from muscle spasticity that looked as though they may just snap off. When I am just with Thomas at home doing our thing it is easier to just see him as he is, and not as a child with CP, but when I leave the house I am in a world where his differences are cruelly thrust into my face time and time again. Still, I kept my face brave, did my best to stay positive and smile in all the right places but inside I knew that soon my weakness would give in and although I tried to blog my thoughts, I simply could not express the things going on inside me, until now.

With all of that said, I want to share where Thomas is at now. I have seen some exciting improvements in him more recently and his paediatrician a few weeks ago was so pleased and surprised by how he had progressed since the last visit when his CP was diagnosed. Many of his improvements are difficult to quantify but to those of us who are watching his progress closely, they are undeniable and fill us all with that little bit of hope we need to keep chugging along. For one thing, I mentioned that his weight was becoming a real concern and there were threats of returning to nasogastric feeding or even a surgically inserted feeding tube into the stomach but in 3 months Thomas has had some wonderful catch up growth and is now sitting around the 2nd percentile for weight and 10-15th for length. He is still a tiny little thing but as long as he stays on the charts we won’t be going down the artificial feeding route. I anticipate in time it will happen, but the longer we can hold off the better. Even better than the weight gain is his interest in solids – he has progressed from completely refusing solid foods to actually being excited to try the newest food and at times even demanding to be fed more! We are taking solids very slowly and cautiously and tend to only introduce one new food every week or two as he does struggle with sensory input and so new flavors throw him, but when he gets the taste for something he can’t get enough… here is a pic of tonight’s dinner effort, salmon and avocado…

I should also mention that his head control has improved heaps! Comparatively to other babies he is still very weak in this area, but a few months ago he would not have been able to sit up in a chair like this for more than a minute or so before his head was flopped to the side. Today he sat up proudly for a good 10-15 minutes while he enjoyed his dinner. He is still requiring a lot of support with sitting and when being carried but as time goes on, we are finding we can give him just that little bit less support and that he tires less quickly. Speaking of tiring, something I have noticed recently is his periods of awake time are increasing – he is now managing to be awake for about 3 hours at a time, followed by 1.5-3hrs sleep then another big awake time. This is a major change as he was sleeping 18hrs a day and getting very irritable during wake times. I believe he got into a cycle of poor weight gain from not having energy to eat, but then being excessively tired from poor growth. The constant sleep also made it difficult to find times to engage him in play and therapy. His sleep requirement is still above that of a nuero typical child, though I would now call it manageable whereas previously it made life difficult for everyone (think planning a day around a baby who needs constant sleep).

Here is another one just to show how much stronger he is… it is also a beautiful photo that I couldn’t resist sharing of my gorgeous little kiddies!

This pic shows that he’s still having some issues with those little hands. He wears splints several hours a day to help keep his thumb out as it likes to stay tucked in there. He is making more efforts to reach and grab for objects but with a thumb that is tucked in it is difficult for him to hold things. As he is getting older, language will soon be able to help – he has already learned to understand the word “open” and will sometimes respond by opening his hand. At other times, the increased tone makes this task too hard and he will tightly fist his hands.

Another little party trick he has recently acquired is rolling, both front to back and back to front. This is a skill that we are trying to tweak though, as his method of doing it is not ideal. On one hand, it is brilliant that he is doing it, on the other, the way he is doing it does not encourage his muscles to develop properly and therefore does not encourage progress towards sitting… so we do a lot of rolly pole practice on the floor.

As you can see, he is a very smiley little boy and honestly, he is one of the most delightful and social little babies I know. He lights up whenever we talk and play with him and he was showing us how clever he can be poking his tongue out and licking his lips. This really gives me hope that he may eventually communicate – talking is a complex activity that requires the intellectual capacity to understand words, which he is demonstrating he has, but also requires control of the oral muscles to form words, I think he will be able to do this at some stage, but I do expect a delay in speaking and I think he will have trouble making certain sounds… but that is all yet to come.

There are many other things that we continue to work hard on, like gradually desensitizing him to unfamiliar environments. We talk about his “safe zone” – that being home, the hospital or his daycare home. In these places his personality shines and he is very responsive to interaction. Most other places, especially those with high ambient noise like shopping centres are exceptionally difficult for him to cope with and he disengages very quickly. It is a work in progress but one that is very important to overcome as this impacts quite heavily on our family, though I will talk about this another time. Overall, Thomas is going to have very significant challenges but today as I massaged and stretched his tight little legs and he “talked” back to me I suddenly felt the weight of the last few months and in particular weeks lifting. That deep breath in that makes me realise I CAN do this and that acceptance that things will be as they are… that it will always be a difficult road for us but that 12 months ago when I feared losing my son at 22 weeks gestation that this journey, that Thomas… is not the worst thing that could have happened. And on that note, I leave you with a beautiful photo from Boxing Day family lunch…

Learning to parent all over again

When we first learned that Thomas had a brain injury that was very likely to result in cerebral palsy the advice given to us was that it was too early to say how this may present and to simply take him home and treat him like a normal baby. In many ways this advice makes sense – his physical needs were the same and mostly could be met in the same way as any other baby. It also made sense to bring him home and give him the same opportunities to explore, to grow, to be loved and enjoyed and to assume that he WILL reach milestones and to celebrate those as any normal parent would.

But I am now learning that this advice hardly skims the surface and that it is not appropriate nor practical in helping me raise my baby. Let me explain…

With my first child, I took her home and did everything that new mums do. I fed her and cuddled her, rocked her to sleep in the wee hours of the morning. I took her out to mother’s groups and playdates and lamented over sleepless nights and poo explosions and discussed all the usual topics like when to start solids, the benefits and drawbacks of dummies and how to keep sane on the difficult days. I never really felt alone and as hard as it was to adjust to the new life of a mum, in many ways it just happened and parenting began to feel natural and make sense. As for Charlotte’s development, she grew and learned new skills with minimal input from me. I don’t mean I didn’t encourage skills and play with her, simply that I never had to consider HOW to teach to do something. She was naturally inquisitive as babies are and her body let her move and interact with the world around her. I remember the first time she rolled off her back I was laying in bed with her about to give her a breastfeed and as I unclipped my bra she was so eager to feed she just rolled towards me. She was 4 months old. Similarly one of her first solid foods was a pistachio macaroon, because she was sitting on the lap of my aunty at a coffee shop and in the blink of an eye she grabbed the macaroon and put it in her mouth. I never had to facilitate these things, all I had to do was include her in my daily life and she mimicked me. This is how parenting a “normal” baby is – you simply provide them with a healthy environment and they learn.

This time I find myself in a different place. It is not enough to just include Thomas in day to day life. I believe his mind is switched on and that he still has that natural curiosity and interest in his environment, however his body does not know how to interact with it. And this is where the advice of treating him like a normal baby fails. In the last few weeks since starting therapy I am learning that if Thomas is to reach milestones I need to actively facilitate this with therapeutic play. I need to adapt his environment to give him tasks that he can achieve to keep him motivated but at the same time challenge him to extend on what he can already do. I suppose mother’s do this anyway, when Charlotte completes a 20pce puzzle with ease, I buy her a more difficult one. When a baby is learning to walk you position yourself just that little bit further away. But this is different, I have to break down the tasks into micro segments and teach Thomas how to use his body. To do that, I need to learn how his body should work and observe how it currently works and think “how can I get him from A to B?”

He is 4 months old corrected age (meaning he is 4 months past his due date and therefore in terms of development should be doing what a 4 month old baby does) but at the moment he is probably more on par with a 2-3 month old baby. He needs full support to sit and his head is still floppy. So we need to help him improve his core strength by limiting the support we give him. Every nappy change, cuddle and carrying hold is an opportunity to encourage core strength development. I don’t just pick him up anymore, I think “how can I pick him up in a way that causes him to activate his neck muscles.” The other big task we are working on is hand movements. Currently his hands are often clenched shut and he has not had the light bulb moment of realising what his hands are for. I cannot just put toys in front of him and expect him to pick them up and play, I need to encourage him to open his hands. When he can do that, the next step is to place a toy in his open hand and for him to learn to hold it. When he can do that, he needs to learn to bring that object to his mouth or in front of his eyes and when that becomes easy he needs to learn how to independently reach for that object and then interact with it. You see this one task that the average baby just does is actually a very complex process that needs to be broken down into very small and gradual steps. And this is why I say I feel like I’m learning to parent all over again!

I find raising Thomas to be quite isolating. I don’t want to attend playgroups with him and answer questions about why he is so small or why he is not doing the things that other babies do. I don’t want to leave my house and go to an environment that is not set up in a way that maximises his opportunities to learn. When other mums talk about starting solids or using dummies and picking a daycare centre, my concerns are of getting to hospital appointments and wondering what the best type of supported seat is to allow Thomas to enjoy the world in an upright position. IF Thomas ever takes his first steps I will not write a facebook status like “OH NO he is walking… now I am in trouble!” – instead I will probably post a video with tears of joy streaming down my face as I watch him achieve something that I never believed possible. I am not the blissfully ignorant new mum I once was, I am a mother of a child who needs so much more than to be treated like a normal baby.

The hardest pill to swallow

Where do I start? Do I start by saying that I had finally started to relax and become excited about bringing home a baby that was healthy and perfect despite all odds? Do I start with medical terminology and explanations? Or do I start by saying how utterly gutted I am and how all my positivity and good spirits have all but disappeared?

Periventricular Leukomalacia is essentially areas of brain that have died due to an insult either in pregnancy or soon after birth. While many brain issues become less risky at the 30 wk mark, PVL is the one thing that can happen at anytime and it is about as bad as it sounds. Common causes of PVL are severe oxygen deprivation or infection in the uterus/placenta. If you remember, Thomas’s early arrival ultimately happened after a raging infection made us both very unwell. The threat of PVL has played on my mind since his birth but as he progressed in leaps and bounds I slowly put the thought to the back of my mind and celebrated how well he was doing, and started to look forward to bringing him home. But Monday brought bad news, a routine head ultrasound showed significant PVLs on both sides of Thomas’s brain. It is irreversible brain damage and consequently, doctors are almost certain that he will have cerebral palsy.

Did I mention I’m gutted? Cerebral Palsy…

The worst part of this news is that it is so uncertain. The brain scans only show the injury, but it cannot predict accurately the degree of disability. The doctor told us it could range anything from some mild muscle weakness or could result in profound disability. It most likely will be physical disability, however it could involve speech, intellect, vision and hearing too. We will not know how badly affected Thomas will be until he is older, with the average age of CP diagnosis around 18 months – 2 years. It is going to be a long and difficult wait for us, to see where Thomas falls on the spectrum of disability.

I said I was gutted right? I cannot comprehend that we are even talking about disability. After everything we’ve been through, we thought we had finally made it to the “safe zone” but of course in pregnancy and childbirth, there is no safe zone. And now we’re presented with the unimaginable, yet very real prospect of raising a child who will have some degree of handicap. What does that mean for him? For our family? For Charlotte? For our marriage and our futures? I cannot even articulate what I have felt for the last three days but have cycled through those feelings of guilt, sadness, anger, frustration, fear and even shame. Yes, I have felt ashamed of my baby and I have felt even more ashamed of myself for ever thinking it. I feel raw, and cheated. Why me? Why us? Haven’t we been dealt a few too many bad cards already? Why MY boy?

Our future with Thomas is uncertain. We are praying and hoping that his impairment will be mild and even more so, we hope that it will only cross the physical spectrum and that intellectually he will develop normally. The doctors assure me that even the worst case of CP can be greatly improved with early intervention and therapy and that most people with CP live long, happy and often independent lives. They give me hope that it is not the end of the world, but at the moment I am struggling to come to terms with it.

People are telling me to be positive and I know I will get to a place of acceptance and positivity eventually (although some days will be a struggle), but right now I cannot be positive or accepting. It has only been 3 days and I still feel physically sick when I think about it and am prone to overwhelming tears. People tell me to enjoy my baby… but how can I when he is 30km away? People say “it will be ok” and I want to believe them but all I can think is “It might be ok for you, but you don’t know what struggles Thomas and I will face”

Despite my fears and sadness, I can say one thing – Thomas has been born into the right family. We don’t have a large family but we are close and not once have I felt alone. We all love Thomas and although I am feeling very detached from him right now, my family still see him as precious and perfect and they will help me cope with whatever disability he suffers. And I will not give up on him. It will take me time to accept what has happened and I have a lot of growing up and learning to do but I will make sure he gets the best chance to thrive. I will allow myself the chance to grieve (and to feel sorry for myself) but I will not be defeated. I didn’t ask for this and neither did Thomas.

If my world was not already upside down, it is now. This diagnosis does not change when Thomas can come home – we are still waiting for him to be strong enough to breastfeed efficiently without needing tube feeds. He is in true Thomas style surpassing all expectations and taking to breastfeeding ahead of schedule, so we hope he will be home in the coming weeks. For now we treat him like a normal baby – we feed him, cuddle him and care for him like any other baby. It will be in the months and years to come that we begin to understand what special needs he has. For now though, he is just my baby.