Failure

Today was a hard day. I felt like a complete failure of a mother to my kids. Maybe I was a complete failure. It was meant to be a mummy daycare day for Jeremiah, but the twins were so needy that I didn’t give him much time. I wanted to, but the babies were crying, screaming and frantic most of the day. I kept my calm, but I wanted to join them. My heart broke for my boy who was waiting for his mummy time.

My boy 💕

Today broke me… I cried. I couldn’t fix things. I realised I am one person and I can’t be everything to everyone. Well, I’ve always known this fact, but today it was blatantly obvious.

The day started so well. After a terrible night, Lorelai had been up crying until past 9.30pm. She just wouldn’t sleep. I eventually got her to sleep, and then got some of my work done. Finally crawling into bed just past midnight. Longing for a good sleep, but up every hour or so to do that pregnancy pee. And Then Jeremiah woke at the fresh time of 5.15am and was ready for the day. Out of desperation he watched my phone, playing kids YouTube videos.

We all eventually got up and got ready for the day/for work, and the twins slept until 9.30. That has never, ever happened before. They are usually up bright and early. I wish I had found a way to have some solo Jeremiah time before they woke up, but I was feeding the dogs, getting things sorted for the day, getting him breakfast, getting dressed etc and then as we were sitting down together to build and play trains, the twins woke up. Because they both slept so long, they had very full nappies and both had pooed. Justin had soaked through, and the bed was wet. He needed a shower and so did Lorelai. Not complaining, I expected this after such a long sleep, however, it meant that the morning was full blast from 9.30am. Non-stop. Full on. Pulled in three directions at once. While dealing with one child (changing, washing etc), then having two others who are desperate for my attention – one being a twin baby that would be crying, and one being Jeremiah who kept saying “Mum, play with me.”

Twin parenting is so different to having a singleton. With one baby, I could sit and play with Jeremiah while entertaining one baby. I can’t do that with two clingy babies, both demanding my attention, pushing each other off of my lap to try claim sole ownership of their mother. Yes, they literally both do this. Don’t be fooled by Lorelai’s adorable and innocent looking face. She pushes Justin hard and kicks him to get off of my lap so I can be only hers. He then does the same back to her. We would make a really great reality TV show sometimes (maybe we could make a living that way hahaha – just kidding). I think about this concept and imagine viewers laughing that belly laugh at us and saying, “no! no way! It can’t possibly get any wor—- what?! It got worse!” and laughing so hard.

And then there’s Jeremiah. “Mum, play with me” still rings out in my ears. My heart aches. I want to, my love, but I also have to adult. I have to clean the babies, wash them, dry them, dress them, get the babies breakfast. They are not more important than you, but they also have needs that I have to meet. And I haven’t had breakfast yet myself, but that’s not your problem, Jeremiah.

The day went from great to bad to worse. The twins got clingier, they hurt themselves as they do, they needed me. Jeremiah tried so hard to play and interact with them. And the more he tried to play, the more it became even more obvious to me that my beautiful, sensitive, neurodiverse child does not understand how to interact with the babies, and I don’t know if he ever will. We have tried so hard to teach him. His idea of interaction with them means that I have to supervise so closely that everything, I mean everything else has to wait. I cannot leave them alone for a 1 minute pee break, or to go get food for the babies or him. I need to have such close supervision, because the interactions are not always safe. What he thinks is play, is often upsetting to Lorelai who cannot see well, or to Justin who plays rough and tumble. Or what he intends as love, like a beautiful hug, is so tight that it hurts the babies. His intentions are so beautiful and pure, but the actions don’t correlate. It must feel so horrible to constantly be trying to show your love for your siblings and have your mother telling you to let go or to stop holding or touching or squeezing them. (Or worse when others do this who just don’t understand you and reprimand you for simply trying to show love in the only way you know how to do.)

The entire day was micromanaging every interaction possible. At one point I was holding Jeremiah because he had been too rough and needed to be held back, and as I was doing that Lorelai fell off the couch. I couldn’t get to her in time to catch her because I was trying to stop an altercation from my older boy. Failure. Yeah, it sucks. I felt like I sucked. I should have been able to catch her, I was so close, but I was attending to my older boy, trying to protect everyone.

Failure.

This is the side of Autism that many people don’t see. Many even see his loud, full-on behaviour as ‘naughty’ – a word I absolutely hate.

Worse still, many view the child as naughty. And this couldn’t be further from the truth.

My boy is trying so hard to interact with two siblings that he adores. And I am asking him to leave them alone. That must feel pretty horrible. To have your mum asking you to please leave your brother and sister alone when all you want to do is play with them.

Yeah – total failure.

My heart is so broken for my boy. I am teaching him, and trying and it will take time. But it isn’t his fault. I have to find ways to help him understand better.

The babies (I should probably call them toddlers now, but we still refer to them as the babies in our household) didn’t have their morning sleep which is when we would usually have Mummy Daycare time – just him and me time. He gets me all to himself. Not today, it was full on. Until the twins finally went down at 2pm. But then it was time for my boy to have his rest. When he wakes up so early he needs his rest or the remainder of the day goes from bad to worse.

So it was time after a few minutes of play to begin the wind down process for him to have a rest. He finally fell asleep at 2.50pm. I drifted off to sleep beside him. My favourite times are sleeping beside my boy, knowing he’s safe in my arms and everything is okay. And we have that peace, that calmness that we just don’t get during the awake hours. It is bliss, and I can breathe in my precious boy who I prayed for so hard for, for those 7 long years.

At 3pm the twins woke up. So that meant I dozed for about 5 minutes… life of a mum with children especially those with special needs… we learn to sleep during our sneezes and be ready to go again… well almost.

I carefully tiptoed out of the room to go get the twins up. They thought it was hilarious to keep playing on the only remaining chair in their area. I was stuck between two crying babies and two babies crying to climb the couch that they keep falling off. Stuck.

Jeremiah went off to dancing with his dad and again, I was still stuck. Could not leave these two babies alone for a few minutes. They kept hitting each other and making each other cry while the other laughed.

Twins – oh but twins are so cute. It must be so incredible having twins! (Well yes, it is, but it is also so incredibly challenging! Blessed beyond measure, exhausting beyond comprehension, too.)

The afternoon continued much the same way. This rollercoaster derailing faster and faster. I couldn’t stop it. Nothing worked. Yeah, failure.

The bedding I had washed from the night leakage, still sitting in the machine, waiting for me to hang it out. The dinner still sitting from lunchtime waiting to be put away.

Failure. Surely things can only get better from here.

Jeremiah’s behaviour was spiraling.

Dinner time, let’s get these kids fed and to bed as fast as we can.

Finally, the twins were in bed and starting to sleep. Finally, I could pull Jeremiah aside for that time he so desperately wanted, that he needed. His spiralling behaviour was his needs not being met by me. And that broke my heart. His spiralling behaviour is more of a reflection of my inability to micromanage his environment around him perfectly than any reflection of him. I hadn’t set his day up for success. I had tried, but I hadn’t succeeded today. Despite all of my effort.

Finally, we planted some bean seeds together for our experiment, played some learning games together, and then after a while his behaviour became destructive again. His needs were being met. His structure and routine were being followed, albeit at 7.30pm at night rather than during the day. So this contributed to his spiralling again.

And then finally, it was time to lie down together so that he could drift off to sleep with me beside him. I could apologise for failing as his mum today. For not giving him the attention, he so desperately wanted and needed. Where I could whisper in his ear just how much I absolutely love him. Where he could hold on to me so tight, the way he does every night, where his routine is the same and predictable and he can feel safe. And once again he can forgive this mum for not being the mum he needed today.

The washing still isn’t hung up. Failure as a wife too. The food still not put away. The dogs yet to be fed, and given their attention that they need. I’m yet to shower and get ready for work tomorrow, and daycare bags are yet to be prepared. Daycare lunches are yet to be made.

What a day. Yes, we all have them, but today broke my heart a little as I realised a little more that our boy is never going to find things easy. He can’t just interact with others. He has to be explicitly taught. And then taught this over and over again. Given the opportunity to practice. And then the babies have to be the ones to give him this practice which means that they get hurt too.

He has to work so hard to be like everyone else. It doesn’t come naturally. I have to work so hard to protect everyone. And I am drained. Nothing left, and still I must go on and get this stuff done, past midnight again. But instead I pour my heart out here as a release, but also for awareness (people who have no direct interaction on a daily basis with autism don’t see or understand this), and also to be real. To show that I don’t have it all together – ain’t that obvious! I am human. I fail. I hurt, but I will keep trying with every ounce of my being.

I also share this so that my children can see me for me. For all of my flaws. One day I want them to know that I was just doing my best. That when they have kids and are having hard days, they can look back and see that their mother struggled too, that no one is perfect and that we all fail at things. And that is okay. We can pick up and try again. They can pick up and try again. And if one day I am not here to say this to them, they have this all recorded for them. And I can reflect if I become so far removed that I forget how hard it is raising a young family with diverse needs.

Failure. It’s okay, we can grow and learn from our failures. It gives us opportunities to be real, to connect, to strip everything back and build again. I am thankful for days like this. It makes the better days seem like a dream, but it also makes me realise things. I get to see that my boy is trying so hard, all of the time. Even when it seems like he is not. He is. And he is my little hero. He will always be my hero. He has far greater resilience than I do. He forgives his mummy day in and day out. He keeps trying to interact with his siblings when they push him away so much and cry. He’s constantly dealing with rejection from them in a way. He’s brave, he’s strong, he tries. He is my world.

Tomorrow will be better. We will all try again.

(Editing to add, this was written a few weeks ago but I’ve only had a chance to upload it now. 😂)

Exceedingly, abundantly and beyond

Our story goes back quite a while ago. We shared it in depth when our daughter Hope passed away during pregnancy in 2015. But there’s more to this beautiful puzzle and masterpiece.

[side note – I was going to post this on Tuesday the 12th November, but out of respect for the heightened bushfire emergency, I decided to wait. My prayers and thoughts are with everyone involved with the fires.]

I forget the year but many years ago I went to Colour Conference. Prescilla was speaking. And I still clearly remember her message words. “God will go exceedingly, abundantly and beyond your wildest dreams or imagination.” At the time those words were words of hope, but they also stung. I was still in the wilderness, waiting for our dreams to be fulfilled. We were still in the season of infertility and loss. Heartbreak. But I clung to those words believing that God is a God of love and that His plans are better than my own.

Fast forward to few years ago when I was again at Colour conference. A beautiful woman of God told her story of infertility and loss and heartache. She was still in the same season that I was. And then again another beautiful woman shared her journey and how it had led her to adopt a beautiful daughter from another country. And then when Bobbie stood up and prayed for those who were in the season of infertility and loss she asked us to stand if that was us. At that time I was too broken to even stand. God knew though. In my heart I stood up and climbed on top of my chair and reached my arms heavenward. On the outside I sat in my chair, head bowed and tears streaming down my face that I tried to hide. At that moment it was very early days of being pregnant with Jeremiah. Talking 4 weeks if that. I had no idea if this was going to be another loss. Each and every day of that pregnancy I spoke life over my boy. I spoke the words of Jeremiah 29v11-14 “for I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. And then you shall come to me and pray to me, and I will listen to you. You will seek me and you will find me, when you seek me with all your heart, I will be found by you.” Declares the Lord” Such fitting words and oh how God heard each and every one of my desperate prayers and then on the 15th October 2016 our perfect little Jeremiah was born. End story? Well, not quite. My heart was so overjoyed, yet our dreams weren’t complete… yet.

Fast forward again and I was again at Colour Conference. This time Bobbie played a prayer she filmed when she had visited a special place from the Bible. My memory is hazy but I think it had something to do with Sarah in the Bible. Anyway she asked us to stand for those who we know who were on the trying to conceive journey and infertility. I stood for a few of my friends, by this point I had Jeremiah. Who was I to ask God for more for us? But in my heart I yearned for more children. I tried not to cry for myself. I reached heavenward with my arm and held Jeremiah with the other. I praised God for the miracle of Jeremiah and believed in great things to come. Just as we had named Jeremiah after the verses in the Bible Jeremiah 29.11-14. God has plans for good. To go exceedingly, abundantly and beyond because He is a loving God. He is our Father and father’s love their children.

I can’t remember which year it was but again at Colour Conference a clip was played about a birth photography Christian business. Their photos were beautiful and captured the miracle of birth in a dignified way. They also donated a percentage of their profits to set up and run a maternity hospital in Uganda. Talk about tears to see this. I love how God touches hearts to make a difference in the world and better the lives of others. Sometimes we are the miracle that God sends to those praying for one. I thought right there if I was ever blessed with another pregnancy that I’d pay for them to capture the first hellos and also contribute to funding that maternity hospital to help others.

 

Scott and I had always wanted three children of our own but after trying for seven years to have Jeremiah we were content and thankful with one. I did long to give him a sibling though. Once I found out I had osteoporosis we learned my time was running out to try for another and my body certainly couldn’t sustain many more pregnancies, possibly not even one more. So our dream of three was quickly revised to hope and pray for one more child, a sibling for Jeremiah.

 

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That little bundle of cells became one of our twins.

We had already gone through another round of IVF to get some embryos as we weren’t ready to transfer yet. Here’s the funny part – previously each cycle we’d been lucky to get one embryo to transfer, usually none or one to freeze if lucky… well on this round, we got seven to freeze!!! SEVEN! Like, how did that happen?! Anyway we were finally at the point to go again for a frozen transfer in November 2018. They transferred one embryo. And by sheer miracle we got that positive pregnancy test. Then my HCG blood test at exactly 4 weeks came back at 740. I remember being suspicious of the high level. In my head I contemplated the thought of another baby in there. I usually only get around 110-150 hcg at 4 weeks of pregnancy. The good news of this pregnancy was shortly followed by bleeding. It felt like each time before when bleeding equalled loss. We saw our obstetrician at 7 weeks to see if there was a heartbeat or if this was another miscarriage.

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Pretty strong pregnancy test, much to our surprise

 

I was lying on the bed while he moved the ultrasound equipment around and I tried to make out things on the screen. He was still and quiet over one part. I stared at the screen, hopeful that I would see that precious flicker. As I searched the screen and tried to keep breathing calmly, I saw what looked like two flickers. It couldn’t be, we only transferred one embryo and I was bleeding. I looked again, there were definitely two little flickers. I looked at Scott and wondered if he could see what I could see. The obstetrician, after a while, turned to us to say that there were two heartbeats. To our joy and delight, we had seen two little flickers on the screen. Happy tears rolled down my face.

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Our two little flickers

The next 13 weeks were full of uncertainty due to the continued bleeding. We were classed as a threatened miscarriage that whole time. My obstetrician was realistic. He’d never had a twin pregnancy with unexplained bleeding make it through to a live birth. Singletons, yes. Twin pregnancy with explained bleeding, yes. But unexplained bleeding, no, they had always ended in losses. I felt there was little celebrating with the threatened miscarriage terminology. I was terrified. I shared a post about that previously if you’d like to read it. Every time I went to the toilet, checking for blood, seeing blood. Terrifying. Would this all come crashing down at any given moment? So I learned to pray again in a different way. I had already been begging for a miracle and telling God how terrified I was. I learned to actually physically hand over my fear and say “here is my fear. It’s no longer mine to own and carry. God, thank you for taking my fear.” And over time I actually became less worried about the bleeding and just knew that God had this. And my worrying wouldn’t change anything.

 

Two babies!!

 

At 20 weeks a baby is officially a baby and no longer a miscarriage if lost. So although the complications didn’t stop there, we were going to have two babies one way or another. We prayed and prayed and prayed that we would have two babies born alive and that would live. God showed us miracles each day.

 

This was such a mentally, physically, emotionally and spiritually challenging pregnancy. Unsure if we’d lose our babies was stressful. My body struggled. Two babies, two placentas, two lots of fluid. The swelling in my feet and body. I won’t go into the long list of complications and struggles. There were so many. It was hard to keep my positivity up and my focus off of my pain. It was a huge test of my faith and my perseverance. Such a struggle physically and all the while doing this as a secret twin pregnancy. We decided to have some fun amongst the stress and surprise everyone with twins at birth. It gave us something to look forward to when it all felt like doom and gloom.

Our announcement post – notice the two babies on the page Jeremiah is holding? hehe

 

Jeremiah had began saying “two babies” which was so adorable but also became clearer and clearer as the pregnancy progressed. At first only we could tell what he was saying but towards the end, I’m sure almost anyone could tell what he was saying. Haha.

 

At 36 weeks our beautiful blessings and miracles were born via a very necessary c section. God knew the desires of our hearts to have three children and the physical limitations of my body for future pregnancies. He gifted us our dreams in a way that only God can. And not only that, God knew the deepest desires of my heart to have a daughter. I would have been happy with all boys, and boys are such a joy and delight. I wouldn’t change Jeremiah for a daughter. I adore him and he’s everything I could have dreamed of. Yet God still knew the longing I had inside to have a daughter. To have that mother daughter relationship that I so longed to create and uphold and value. God fulfilled that longing in this one pregnancy. To be blessed with a boy and a girl is the most beautiful most grace filled miracle. And God knew that Jeremiah will probably need a brother to support him and be there for him. I’m so incredibly grateful that we were blessed with a boy and a girl. Like, how on earth did that happen?! God went exceedingly, abundantly and beyond. That’s how. Those words that were prophesied all those years ago came to life in our family. Three children. Boys and a girl.

 

The Monday before I had the babies.

Yep – I was HUGE!

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Jeremiah and Scott kissing the babies.

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Each ultrasound always had bits of the other twin in the background

 

This was about 3.30am on one of the hospital visits for lots of bleeding. I was told my HCG has going down so I was probably miscarrying.

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So if I could tell that woman or couple struggling with infertility right now (or any struggle) something it would be this. God will go exceedingly abundantly and beyond your wildest dreams and expectations. The best is yet to come. It won’t be in your timing, but it will be in His perfect timing. None of our journey and story would mean that much if it had come easy. I wouldn’t realise the absolute miracle that these children are if we hadn’t spent years in the desert praying and mourning. I think God allows some things to happen (let’s be clear though, He doesn’t make bad things happen) so that we can learn invaluable lessons. Our children are so valued and treasured by us for the precious miracles they are. I don’t take a moment for granted, I try not to. And I am full of thankfulness for these miracles.

 

Jeremiah, Justin and Lorelai are part of hundreds of babies that have been born to people who have been desperately praying for a miracle and who have stood in faith (even if it was internally because on the outside they were too broken to stand) at Colour Conferences across the globe. Bobbie Houston, if you ever read this – thank you. Thank you so much for listening to that call on your heart and for following that. My miracles are here and so many others are too as a result of divine intervention.

 

As a mother now to two special needs children (see previous posts, but in a nutshell Jeremiah has a complex medical diagnosis; Lorelai also has a complex one including legally blind), I am blessed beyond measure. My children have taught me the essence of love. They are perfect as they are and they have a purpose. They are meant to be here. And I know God has plans for good, for hope. I still sometimes can’t believe we finally have our three children. That our dreams came through from that wilderness of darkness to now. Don’t lose hope. The best is yet to come.

 

I also think stress/worry can steal so much joy from our lives. I know it did a lot of my pregnancy so I had to keep reminding myself to not be anxious about anything but instead to pray and give my worries to God, and you know what? It works. That burden of anxiety can leave you and you can enjoy the moments. This verse is such a great mantra to live by, and I know for me I have to be deliberate in my mind to breathe and let go, otherwise I will worry, and to be honest, what does worry actually do? It doesn’t change the outcome. Here’s the verse that I absolutely love:

Philippians 4:6-7 (NIV) “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

I love how it says in that verse, “with thanksgiving” – because I think that is the key also, that when we are so worried, if we give our worries to God, and then LOOK for everything to be thankful for, our perspective shifts. We gradually start to see the beauty even in the really challenging times.

I won’t lie, it’s been challenging coming to terms with Lorelai’s multiple diagnosis’. But, I know the story is not over yet. This was just the start, God’s already brought us through those seasons of waiting for our children, and then having them. And now we are parents to children with special needs and to twins. I’m part of all of these ‘clubs’ I never new existed. I know that God will use everything for good in His perfect timing. Already Lorelai’s diagnosis has brought us closer together within our local community. She will grow up feeling loved and included and won’t be excluded for her disability, and we will utilise all of her strengths and abilities.

Life is good. Life is wonderful. Sometimes it is easier to allow the situations to bring us down. To cripple us. But that doesn’t help anyone. Yes be sad, and come to terms, then find a way to be thankful and to release our worries.

Thinking back to November the 12th 2018, we had no idea that in 12 months time so much would have happened in our lives (more to come when I get another few weeks to write a few sentences between wake ups each night haha) and that we would have TWINS!!

So happy transfer day twins – not sure which one of you got transferred but we will celebrate you both on this special day! We love you more than we could ever put down in words but we will spend the rest of our lives trying to show you by our actions as we parent you.

Our three rainbow babies.

Our wonderful obstetrician.

Thank you to The First Hello for capturing these beautiful images.

 

Lorelai – our beautiful girl

This is a reminder to trust your gut. Always trust your gut. I wish so much that I was off, but I am learning that we are given these instincts and intuition for a reason.

I remember the nurse placing Lorelai on my chest so I could see her and Justin on my chest too while the obstetrician stitched my belly up. That hair, that white hair… I remember thinking, “I wonder if she is albino*…” I asked the nursing staff later on in the hospital and they light-heartedly brushed it off and said she is just very blonde.

Lorelai often spews after or during feeds. It often comes out her nose. I’ve mentioned this so many times to various health professionals, both at hospital and the regular check-ups we have for the babies. On a Facebook group someone had the same issues with her baby. A speech pathologist said this is something that you need to see a speech pathologist for. I would never have known a speech pathologist would see a newborn for issues like this. I private messaged the speechie that said to get a referral and she explained a few things to me and why we might want to see a speechie.

So, I asked for a referral for Lorelai to see a speechie. Was told it’s not necessary and she’s feeding well, putting on weight and it’s normal for babies to spew. I insisted on a referral anyway. A speech pathologist called me and asked me so many questions and decided she needed to see us urgently to watch a feed and see what’s going on. She booked me in for the following week.

I have noticed that when I play with Lorelai, look at her, do tracking exercises that it is very hit and miss with her. Mostly miss. It’s like she is looking through you not at you. Like she can’t see you. I brought this up at her first and second check-up after returning home from birth. Both times they looked and said there’s nothing to worry about… but hat nagging feeling inside of me wouldn’t go away.

Long story short, the twins have been very sick and were in hospital for almost 2 weeks. Justin had breathing difficulties. Justin was admitted on the Friday night and monitored. He seemed to come right by morning. Lorelai stayed home with me and would only settle when Jeremiah cuddled her to sleep. Justin come home on Saturday. Both he and Lorelai continued to progressively get worse. Their little lungs and bodies trying to cough was quite hard to watch helplessly. Made me realise why whooping cough is so lethal for babies.

 

She only settled with Jeremiah.

My heart melts

The hospital kept Justin’s bed open overnight in case we had to come back. We monitored him and Lorelai closely at home. They both seemed to be working harder than usual to breathe. The hospital called us on Sunday to ask how Justin was and how Lorelai was too. We had already been talking about if we should take them to emergency or not. How do you know if it is bad enough to go? We don’t want to be presenting to emergency every time they get sick. Sometimes what we might think is bad actually isn’t… but what if we miss something and then should have taken them in? Anyway, the hospital said to us to bring them both in because they wanted to check them over before a doctor went home.

So we packed up a few things and drove both twins and Jeremiah to the hospital. They did their obs and very quickly Justin was placed on oxygen. His little body was working so hard and his levels weren’t great. He was on oxygen for a few days.

Justin was so sick and so miserable. Took ages for him to finally sleep.

While I was feeding Lorelai as a nurse fed Justin and Jeremiah played, I raised my concerns about Lorelai. And while feeding her she did a projectile vomit, out the nose too. The nurse said to talk about these concerns with the paediatrician in the morning because he is really thorough and will investigate it if he thinks she needs it.

When the paediatrician did the rounds in the morning, he listened carefully to our concerns. He got in touch with the speech pathologist Lorelai was due to see later in the week and the appointment was quickly upgraded to an X-ray feed where they watch where the milk goes using an x-ray machine.

So if you’re having any issues with feeds or anything else. Seek answers. Push. Find the right person who will advocate for your little human. The issues we were having include but aren’t limited to; gagging, spews, coughing, slow feeds, long time to attach or coming off, watering eyes, arching back, crying in pain after feeds, and some other things I can’t remember now.

We had that x-ray ultrasound the next day, there’s usually months long waitlists. I realised they also thought my concerns were valid as the 6 people behind the special x-ray machine shield talked and the specialist standing with me told me a little about what they were saying about her swallowing so I could watch the screen and understand what I was seeing too. The X-ray showed some abnormalities with the feeding. Lorelai was aspirating when she was drinking. What that means is that as she was drinking, some of the milk was going down into her airways, and thankfully coming back up. The risk was/is that as she tires during a feed, milk will go into her lungs, and potentially she will get very sick, things like pneumonia. So I’ll explain what this means now for her and us in a minute…

Lorelai in the machine.

So we drove from the bigger hospital back down to our hospital, back to where Justin was. He is a ladies man, all the nurses had enjoyed their cuddles with him – I don’t think he had missed us one bit.

On the same morning of the video x-ray swallow study, a specialist ophthalmologist called in a favour to our paediatrician to come visit Lorelai to assess her eyes. As I said above, I had noticed something a bit ‘different’ with them but didn’t know how to describe it properly. There was this almost rim around her eyes that seemed translucent. And when I tried to do tracking things with her, she just didn’t seem to follow. It was as if she was looking through me, not at me. I had concerns that she was vision impaired. I wondered if I was reading too much into it, but my gut said something wasn’t 100% here. Her eyes would move back and forth, plus she would squint or close her eyes in bright areas like outside.

You can just see the rim around her eyes.

The specialist brought out his special equipment and really checkout out our little girl’s eyes. And unfortunately, our concerns were substantiated. He confirmed that our little girl is legally blind. He said she has some vision because there is some pigmentation there but there isn’t much. The one thing I had hoped was that she would be able to drive, and this is now no longer an option for her. This final step in her diagnosis confirmed that our little girl has Oculocutaneous Albinism (OCA). OCA is a rare inherited disorder (although I like to think it is a beautiful condition reserved for a few special people rather than a disorder – it is estimated only 1,500 people have albinism in all of Australia). OCA is characterised by a reduction or complete lack of melanin pigment in the skin, hair and eyes. It is caused by mutations in specific genes that are needed for the production of melanin pigment in cells called melanocytes. This results in abnormal development of the eyes resulting in vision abnormalities. OCA comes from both parents being carriers of the genes. Lorelai also has nystagmus which is involuntary side to side eye movement and photophobia which is sensitivity to light. She has foveal hypoplasia which affects visual acuity and mis-routing of the optic nerves. The light skin is susceptible to skin damage and skin cancers. There are seven types of OCA and we are awaiting results from genetic testing to learn which particular one she has. Only time will tell how severe her eyes sight is.

Lorelai also had a brain and renal ultrasound which came back normal however the paediatrician still wanted to have a brain MRI done. That was scheduled quite urgently and we managed to get that done. It was so hard to do because they have to lie still but we couldn’t have her sedated this young. Took a lot of patience and the staff at the mri place were amazing, particularly the male in charge of it all. He was incredibly patient and helped us get Lorelai in calmly after a few attempts. Thankfully they got most images they needed and all came back clear.

Lorelai also had her first blood test attempts. Twice they tried and couldn’t get enough blood. Oh it was horrible to hear her quiet, horsey cry and screams. She recovered so quickly though – what a brave girl we have.

Getting her first blood test (attempt anyway)

So in a bit of a summary (if you’ve read this far), beautiful Miss Lorelai has a few areas of special/additional needs. These are, feeding, OCA particularly vision, Low muscle tone and her immune system issues.

Feeding:

For now and for the forceable future, Lorelai has a very strict limited amount by mouth of either thickened breastmilk or thickened formula which will hopefully increase over time if she improves. She has a strict timeframe to drink it and what isn’t drunk in that window has to be stopped and discarded (to reduce her fatiguing and then therefore aspirating as she tires). The rest of her milk quota is done through a nasal gastric tube (NG tube). This is a tube through the nose and down into her tummy. It has to be changed at least once a week by a hospital visit (45 minutes each way). So far this has been more frequent than weekly as the tube tends to come out a bit, or the size was too big, she was having trouble breathing, etc. So we are becoming regulars at the hospital – not something I ever imagined for our family.

If she’s having a feeding tube we may as well have it in style thanks to a little company called A Simple Patch. So cool hey!

Meal prep for 4 feeds for each twin.

I think she is trying to see something during her tube feed.

We also have to be very strict with her feeding position. She has to be in an L-shape with her head raised, bum to my tummy. This also reduces the aspiration risk. When doing the gravity NG tube feed she has to be head raised and often wants to be held. We encourage her to take the dummy to try and develop her suck during the feed. The feed for her takes around 30 minutes to an hour from start to finish. It takes around an hour to prepare all of the various things needed for four feeds for Lorelai. And then the steralising afterwards too. I have learned so much about alternative feeding since having our gorgeous girl. The hardest thing to learn to do was testing her stomach acid prior to feeding. It isn’t fun drawing up liquid from my little girl’s tummy, but we have to do this to make sure the tube is in her tummy and not her lungs for each feed. It is particularly challenging feeding two screaming babies. I have to pick one and feed then feed the other – different to how I had planned to feed twins which was both at the same time.

We also have to monitor her vomiting. She vomits so much and so easily. She has a very strong gag reflex. If anything enters her mouth she gags and spews. This can also dislodge the NG tube meaning more hospital visits.

OCA and Vision:

“OCA is inherited as an autosomal recessive genetic condition. Recessive genetic disorders occur when an individual inherits an abnormal gene for the same trait from each parent. If an individual receives one normal gene and one gene for the disease, the person will be a carrier for the disease, but usually will not show symptoms. The risk for two carrier parents to both pass the defective gene and, therefore, have an affected child is 25% with each pregnancy. The risk to have a child who is a carrier like the parents is 50% with each pregnancy. The chance for a child to receive normal genes from both parents and be genetically normal for that particular trait is 25%. The risk is the same for males and females.” https://rarediseases.org/rare-diseases/oculocutaneous-albinism/

It was a lot to take in when she was officially diagnosed/labelled OCA. And my way of coping is to crack a few jokes. So I awkwardly cracked a bunch of vision jokes with the specialists, saying “I guess we will keep an eye on her then…” there was awkward silence from them so I followed it up with a cracker, “See what I did there?!” Over time our paediatrician has gotten to know my sense of humour. I’ve even managed to get him to crack a few jokes (he reminds me of Dr House from that TV series with his dry/dd humour, yet comprehensive approach).

I just remember thinking in my head, as it felt like it was exploding and in a different dimension where this wasn’t happening to our little girl, but my heart was feeling like God had let us down. It was the one thing I didn’t want for my girl. I have always, always yearned for a girl. To have a mother daughter relationship. When I found out one baby was a girl I was over the moon happy. And to find out that my girl, my dream, has such complex issues broke my heart a bit. Not because I think she is defective, she’s only sheer perfection to me fyi. More because I know she has lifelong challenges ahead of her. Over the last 2 weeks I have felt like God has been reminding me that He hasn’t let us or her down. He has given us such wonderful blessings. And I am reminded back to my days as a young, naïve, yet optimistic and dream-believer teenager, that I wrote down in my diary something along the lines of “my hands will be used to touch/help thousands of others.” That was my goal for my life back then. I just wanted to help others. I didn’t know how at the time. But through our IVF journey, our miscarriages and then our beautiful miracle Jeremiah, and now the twins, God has done exactly that. He has used my hands (through the blogs) to help thousands (and I don’t at all mean that in a self-gratifying way, it’s quite the opposite – God has used our story and our lives to do far more than we could have ever done to help others if we’d have had an easy life). I’ve had so many people contact me about our IVF journey and miscarriages that I have been able to give some help/support/hope to. So there was so much purpose in our heartache. And now this. Perhaps through this we will help others as so many have already helped me as I have been on my quest to understand what this all means. Thank you if that is you – you all know who you are.

Immune:

Our paediatrician is still investigating Lorelai and running a range of tests for an immune condition. He seems to think that she may have an immunodeficiency/ autoimmune compromised disorder. And what this means for now is that she can’t have any of the live vaccinations and nor can Justin because there is evidence to support that people with these immunes that are compromised may pick up the thing that the vaccination is trying to prevent them from getting (because it is a live vaccination). I don’t want to start a vaccination debate here – this really isn’t the time or place for it so please don’t even start – any comments will be deleted). So both her and Justin will have to rely on herd immunity to not get sick. It also means that any fevers around 38 will require hospital for her (with Jeremiah we just watch and observe and don’t get too concerned until it reaches around 40 degrees). It also means she will probably get sick more frequently and we really need to protect her by making sure no one comes into contact with her (or us) if they are sick – this is so so so important and also very hard to enforce. We have to be so very careful with her because she is prone to being sick and her little body isn’t strong enough to fight hard.

Going for her brain ultrasound.

Going for their ultrasounds – Justin was still on oxygen.

Turns out twins really do have a special bond.

After the video x-ray learning the new feeding position for bottles.

Probably doesn’t need a caption, but I love the rawness of this photo.

Rocking the tube!

Low muscle Tone:

She has low muscle tone which means she is seeing an occupational therapist (OT) and a physiotherapist to help her improve this. Our paediatrician seems to think everything above is all linked and he is trying to get to the bottom of it all – he said we should expect another diagnosis in addition to the OCA.

So trust your gut ladies and gentlemen. If you’re not being heard, insist. Seek information elsewhere. If I hadn’t seen the post another lady made and if another speech pathologist hadn’t told her she needs to see one then I wouldn’t have asked for a referral and we’d have possibly unintentionally endangered our little girl’s life. And if the paediatrician who first saw us on entry at the hospital when Justin was sick was the only one we saw, Lorelai still would be undiagnosed. I’m forever grateful that God brought us to the hospital when we went, for the nurses that wrote in the notes my concerns so that the right paediatrician for us could see us. He is brilliant and we are so thankful. Of course, I don’t want these labels for our daughter, but living in denial doesn’t change anything. That would just prolong the help and early intervention that Lorelai needs. Yes, this is so exhausting. Of course, having kids is exhausting. But having a beautiful older son with complex additional needs and now newborn twins, with many additional needs (Justin was easier but he is having terrible feeding issues too now and is also being seen by the speech pathologist, OT and physio) has really drained us in so many ways. Mentally, physically and financially. Did I mention I re-fractured my back in two more places a week and a bit before we were admitted to the hospital? The almost 2 week stay on pull out beds definitely didn’t help my back.

Our request is prayers for Lorelai and for her future. God is a God of healing. We pray that he restores Lorelai’s vision – that would be such a miracle, but if not, that she has better vision than predicted. That she develops well (they are saying she will be behind on all of her milestones due to many reasons E.g. her low muscle tone). They are trying to find what else is the cause/diagnosis.

We are still dealing with this as best that we can. Knowing our little girl is vision impaired leaves many questions unanswered. Will I be able to return to work or will I have to be a carer full time? Financially how will we provide for our children but particularly her and her needs? How will we make our living environment set up for a vision impaired child? So many questions but we know God holds the answers and will lead us through. We decided to once again share openly because when we are open, we can help those walking a similar path with their family or their own lives. When we keep it to ourselves, we limit the potential for greater good that can come from our own mountains that we need to climb.

To teach Jeremiah not to pull out Lorelai’s tube (he wants to help her not ‘hurt’), we got him a doll and attached a tube. He took it to daycare to show his friends.

Lorelai Grace Merle – my Nanna would be so proud of your resilience. 

I remember driving back to the hospital after having a night at home so that I could be with Zazu (she is on her last innings, she’s almost 16 and isn’t doing so well). While I was driving back I felt a flood of emotions. I had kept it all together quite well until then. But then I was suddenly on my own. I began listening to the CD in the car cd player. It was Finding Faith. The first track played and it hit me to the core. God used those words to remind me of His good hands. He’s got this. That He could heal Lorelai if He wanted to, restore her vision. But if He doesn’t, that’s okay, God will carry us when needed and that everything will be okay. These are part of the lyrics:

Cause the hands that hold the world hold my heart
And the hands that heal the world heal my heart
There’s never been a heart that you can’t change
There’s never been a life that you can’t save
Cause the hands that hold it all are good hands

When I feel the weight crushing down on me
I know I’ll be okay, God will carry me

https://www.youtube.com/watch?v=PQqIscnqX6Q

I actually ended up sending a message of thanks to Finding Faith for sharing their music with us all. It made a huge impact on my perspective. And I was sent back some very encouraging words particularly around vision impairment. And if you’re reading this – thank you so much Tim. Those words truly uplifted my heart.

The week and a half or so back home have been every bit exhausting. Functioning on little to no sleep and having screaming crying babies sure does mess with the mental health. Trying to stay on top of feeds and preparation is stressful. I always need to stay at least one step ahead or everything crumbles in screaming sirens of two babies. Yes, definitely double the blessing, and would be exhausting anyway if they were ‘regular’ babies, but with the additional needs of Jeremiah and now also these beautiful twins, it’s harder than I can place in words. We have been stretched more than we thought possible. The complexity of feeding Lorelai is quite consuming. And over the last week Justin has developed complications with feeding too.

But by faith I know, we will get through this and God will use all of this to bring good. He already has. And what I am learning will help me continue to help/support others. Having Jeremiah with all of his additional needs has helped me learn more and I think has (hopefully) made me a more compassionate person. I’m sure Lorelai will teach me that sight isn’t everything. That the world is a beautiful place even if you can’t see it all. I am reminded of Louis Armstrong’s famous song, what a wonderful world.

Besties

If only parenting twins was always this ‘cute’

Hopefully by sharing our journey with you, you might understand more about Albinism and perhaps this might just help another person, or at the very least, this might help our little girl navigate the world with a community of support and love surrounding her. We don’t want our little girl to be ‘different’ or looked at as ‘disabled’ but rather that those around her will see her abilities and strengths and love those. She will have two gorgeous brothers either side of her to love and protect her, as brothers do. And in case you’re wondering, no I don’t think God caused this. I believe that God will use this, yes. That God made her perfect as she is, yes. But I don’t believe he causes any type of hurt or heartache, but He can bring good things from all situations and we choose to believe that in all things He works for the good, and so He does for our little girl, too.

*Please note, I have learned a lot about Albinism. Calling someone an ‘albino’ is considered derogatory and degrading. It is more acceptable to say ‘someone with albinism’ or ‘….. has albinism.’ Back in the hospital I had no idea about the term albinism, I had only ever heard the term albino. Hopefully this educates others too. 😊

Our miracles, all three of them.

Proud big brother.