This week's post was written by Vicki Moore (aka NICU Mum), and is so beautiful and heartfelt. Elijah's start in life was far from easy and I can't even begin to imagine how difficult it must have been for them all.
I have never really thought of Elijah being a high needs child, however that is exactly what he is. I spent many a month denying this fact and willing that it wasn’t true. But it was, Elijah was different. No matter how normal our day to day lives may appear to the outside world there are times we have to face up to it Elijah is different. He was born with a Congenital Heart Defect called Tetralogy of Fallots, he also suffered a Neo Natal stroke. Elijah had a full repair operation via open heart surgery at 6 months old. When we were discharged from NICU after 9 long days this is where our journey began as being the parents of a high needs child.
We were visited every few days by the NICU outreach team, I never had to even go to the health visitor to weigh Elijah this was all done for me. We were told to try and live as normal lives as we can. Easy to say when your child doesn’t have a looming life threatening operation. I tried to get involved with the regular new born activities, baby classes, mummy groups but if I am honest I couldn’t face them. I couldn’t face the pity, the questions so I avoided them. When Elijah started displaying symptoms for colic, reflux etc. all of the usual suspects I couldn’t just go get something from the shop I had to go see the doctor. No health visitor wanted to touch us with a barge poll. When Elijah had his jabs I had to get the go ahead to even give him Calpol! When Elijah got his first colds, we ended up in hospital, twice.
I couldn’t risk just leaving him with anyone so I didn’t really go out for the first few weeks. There was a risk Elijah could have an episode and he would need to be hospitalised. It wasn’t fair to put that risk or pressure on someone. As Elijah spent the majority of time with me, before his op he did develop quite bad separation anxiety and wouldn’t like to be held or looked after by anyone. We also didn’t dare move him into his own room, so he co slept with us until he was a year old. Just in case he had an episode or something happened to him whilst he was in recovery. As a result, it was a lot harder to move him to his own room, and he still wakes in the night and occasionally comes in our bed now.
I then had to begin to advise family and friends to stay away if they had colds, or had been ill. I couldn’t risk the effect it would have on Elijah’s heart. We knew he had to be the healthiest he could be for his operation. Overall he ate well, but from day one I had to note down each feed, the amount and I remember the panic when Elijah wouldn’t eat. If he didn’t eat, he wouldn’t gain weight, he wouldn’t be strong for his operation. When Elijah developed silent reflux I had a full blown anxiety attack. We spent hours up the hospital multiple blood tests, heart scans, development checks you name it. I think we could probably tell you the whole hospital menu if you asked. I think this is where I began to develop a slight fierceness, I pushed for what I thought was best for Elijah and wouldn’t let anything prevent this from happening. I researched everything I could so I could go into appointments with the correct questions and would understand their answers. They tended to respect this and were always honest with me.
From the threat of germs and documenting everything Elijah had every even drunk or eaten we eventually managed to drag ourselves through to the operation. This in turn led to a whole new load of things we had to be weary of, not being able to hold Elijah under the arms for about 2 months. Giving him his pain relief every few hours for about a month afterwards and making sure he was eating and gaining weight. Again this led us to spending more time in hospital with check-up appointments and scans. Physically, Elijah was doing great, mentally he developed night terrors after the operation. This had really left its mark on us, and I began to struggle. I couldn’t get over what we had been through and developed PTSD.
Something began to happen, we spent less and less time at the hospital. Our appointments became less and less frequent, but it didn’t change the fact we had a high needs child. When it was finally time for me to go back to work it was time to find a nursery. We were so lucky, when I enrolled Elijah they knew he was going to be a high needs child. They assigned us an amazing senior key worker who took her time to understand his condition, and what to look for. We had a care plan and went into details. She knew I worried and kept me updated during the day as well. Like any child starting nursery they would pick up some germs they haven’t been exposed to before, with Elijah we needed to be especially careful. Still in recovery, they let us know if something was making the rounds and we would choose to send him or keep him at home. They also had to still be super careful with him as we couldn’t hold him under the arms. They were amazing, but all of this prep work was just to send him to nursery something which for most people us a seemingly easy and normal thing to do.
It could be days, weeks or maybe even a month where it seems we are living a normal life and raising a normal little two-year-old. Then something with come, like smack to the gut to remind you that actually no, you have a high needs child. For me at the moment this is flu season. As everyone is getting excited for Autumn, Halloween and Christmas (Me included!) I am also thinking of the dangers of cold and flu season to Elijah. He is now old enough to have a flu jab, me Greg and immediate family are all getting one too. The flu for any child is dangerous, for Elijah it could be fatal. He could have a heart attack. Even though the weather has only dipped slightly, the heating is on and Elijah has his coat and hat on. Yes, this may all seem a bit much but in my eyes I have to do everything I can to protect Elijah from getting ill this winter. He does have his fair share of colds which don’t seem to affect him, any worse than another child his age. It has been a very long time since we have had to be admitted but that threat is always there.
I think when you have a high needs child, no matter what form that may take you can never forget it, no matter how ‘normal’, things seem. I know that we do not have it as bad as it could truly be, and for that I am grateful. There is also a lot of anxiety and loss of control associated with being a mother of a high needs child. You just cannot predict what will happen even if on paper you are doing everything right. If you do everything you can to try and prevent something there will also be a curveball. Sometimes it can be hard trying to get across your worries of being a high needs parent, they look at Elijah and see a healthy little boy they do not know why I am fussing so much. There is a very fine line between letting Elijah go off and explore and be a ‘normal’ little boy and trying to keep him safe, as there are dangers that will not be a danger to other children.
The future scares me, this is where I believe Elijah may resent his condition. He cannot get a piercing or tattoo and won’t be able to drink or smoke. While the other teens of his age group are doing this, Elijah will likely need a further surgery. So far, nothing exerts him too much, he keeps up with everyone else but when he gets to high school this may be different. He may tire easily, he may not be able to take part in as much sport as his class mates and we have to watch if he cannot maintain his weight gain. Although this is 10+ years away it is in the back of my mind.
It took a lot of work on myself but I wouldn’t change being the mother of a high needs child, I wouldn’t change Elijah. This is the family we were supposed to be, and he has made me a better person, a better mother because of it. When others ask about Elijah’s condition, and the op I don’t want their pity, I want them to ask questions. I want them to go and tell others, as this is raising awareness for CHD. One in 100 babies are born with CHD and many will become heart warriors (someone who has had open heart surgery) just like Elijah. Things didn’t go to plan, I didn’t get my envisaged start to motherhood that I wanted, but I have a funny, kind and gentle little boy and for that I am proud to be a heart warrior mum, and the mum to a high needs child.
For more of Vicki's wonderful writing and work helping other mothers', please check out the links below:
Blog - Confessions of a NICU Mum