Processing a Diagnosis: Parenting from the heart.

When you cant sleep, when thoughts are running through your head and the house is silent, how else to process your thoughts that write them down and share them with the world. Here to seek the reassurance that I am not alone, that I am not the first to feel this way and to know that perhaps one day from now someone will stumble upon this blog entry and know that they too, are not alone.

So I got M’s diagnosis of mosaicism in 2017. He was 8 weeks old before any suspicions were raised and then we had tests etc….. Mosaicism is a form of Downs syndrome. It is a Trisomy 21 condition. Unlike downs syndrome where every cell carries that extra chromosome, in mosaicism it isn’t in every cell. Basically the additional chromosome wasn’t present at the first cell division at contraception, it appeared randomly somewhere down the line. In Ms case, 1/3 of his cells are affected but we have no idea which ones or how this could potentially affect him in the future. So he will have all the same checks as any other child with a Trisomy 21 diagnosis.

At the end of 2017 we moved county so he wasn’t seen by peads.
March 2018 we had his 12 month check with health visitor who said she would refer to Child development peads in this county.
November 2018 she calls me apologising she forgot to make referal and was doing so now.

In this time, I haven’t worried. He has been growing and developing well. He walked at 10 months but went through the “normal” milestones. He is aware, he copies, he can communicate his needs, he can jump etc… he’s doing pretty bloody brilliantly even if I do say so myself so I guess I’ve been in my little bubble.

Now all these appointments are coming through. He is under audiology because “children with T21 can be more prone to glue ear”
Physio because “low muscle tone is common”
Speech and language ….. He doesn’t talk much, I’m told clearly his level of understanding is greater than his communication and perhaps I should try pictorials and some simple signing to help him. …… both great ideas don’t get me wrong, But these things aren’t generally monitored or suggested for “normal” 22months old. Because children all develop in different times…..
He needs to see a pead to be referred to ENT to check ears and nasal passages. He needs regular blood tests because children with T21 need their infection markers checked because they can be more prone to infections.. . He needs annual thyroid checks…..

M hasn’t had his 12 month vaccinations, despite approaching 2 yrs. He was late having all of his baby ones because our doctors surgery wouldn’t give them when he was unwell and he always had quite a bunged up nose. When we moved county our new GP looked at his records and suggested the blocked nose could be as a result of narrow nasal passages due to the T21 and gave him his jabs. M then stopped weight baring for about 4 days, we had to take him back to the GP who confirmed it was likely a result of the vaccine. He then got poorly and came up in quite a nasty rash that looked similar to measles. So we never returned for the boosters. Yesterday at an appointment I was told by a medical professional that children with T21 are more vulnerable to infections and so in some cases are advised against the vaccines anyway, suggesting that perhaps I made the right call. Which blew me away, why was this never mentioned at ANY of my prior appointment about vaccinations?! And why now is it such a minefield to find out as there are so many fors and againsts?

He will be 2 in March and I guess I’ve just kind of ignored his diagnosis because he is doing so well and nothing has affected us. Now this, all at once, and my husband been at work so I have been attending these appointments without him and I’m spending my evening’s repeating what’s been said like a flipping dictaphone and not really processing it myself and this evening have finally been in the car without children and broken down in tears.
And I don’t know why!? I know I am lucky, and he is an amazing boy bright as a button and I wouldn’t change a thing. But it like bam, hit me. You know? And I feel a prat. Because I knew this, and I know he’s doing fab. But no one gets that my logical head understands but my heart needs to just weep a little bit for no other reason than to just try and process something.

Parenting is an utter minefield. From day one right into the adult years I guess, you don’t stop worrying about your children. As parents you want to see the good in them, at times ignoring evidence that suggests they might not be that nice human beings, you don’t want to see it. We want to keep our children safe. I get it.

I have had several raised eyebrows over the years. Head shakes, questionable stares and outright being told I am wrong. But actually, I can honestly say that my teenagers are fairly decent human beings. They work hard, are self motivated, know their minds and have fantastic friendship circles. People like to be around them. They aren’t out smoking, drinking, doing drugs and nor are they cooped up in bedrooms on their own. They are active and valued members of the family and community, and they join us for activities and events by choice. They are always given choice. And mostly I am proud of the choices that they make. Like all humans they sometimes make mistakes, or over react to a situation but their hearts are always in the right place and they apologise when they need too, even if at times those apologies are not accepted graciously.

Today we were at an event where one of the young people got injured and was taken ill. These teenagers rallied round and were brilliant without crowding or getting in the way or being dramatic. From fetching drinks of water, to holding hair back, removing chewing gum from her mouth. Playing with the little ones and keeping them occupied so that their curiosity didn’t get in the way of the ambulance crew, and later sitting quietly and respectfully in the other room away from the ambulance crew quietly hugging the injured girls sister and making sure she was also ok as she had been shook up. I was proud of each and every one of them. I am aware that I may be biased, but when you get your thoughts confirmed by the youth worker staff who run the venue, that they don’t often see young people at their venue so supportive and caring yet totally sensible and helpful, it validated a pride that needed no validation.

So I have trusted my judgement. I have parented from the heart. I have made mistakes, I am human. But my teenagers are pretty decent human beings, and the 4 yr old, while he is a menace he has some pretty useful skills and knowledge already, and some pretty fantastic role models all things considered. As for M, I will carry on, processing each topic and it arises, facing each appointment and taking on board what is said, but I will keep parenting from the heart. Because in the end, that’s what will count. That we did our best.

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