When it all hits home……. when you finally see that your child is delayed. You finally realise that he has a syndrome. Not that you were not well aware of that the whole time, but you suddenly notice, you see from an outsider looking in……..not the mother that wants to believe that he isn’t that delayed, finally it all hits home.
Darcy is now 5 months and 2ish weeks old. So much has happened and I do apologise for not keeping up with the blogs. Honestly its not from not having anything to write about, it is more to do with the fact that its all been that little too much to write, its been a little too much for me to even try and process these days.
Darcy is amazing.
Darcy is such a beautiful soul, his eyes are so deep. He shows such a love by just looking at you. He has this old soul, he is not a child that wakes crying. Every morning he is smiling. Every night before he goes to sleep he is smiling. And that makes this whole situation so much easier to accept. Everyday that I put in 110% for Darcy he returns that with so much more. His little milestones that I hope he achieves, he has. The little problems that we face and I am unsure that he will meet, HE DOES!
Cornelia de Lange Syndrome who would of thought. Some times I think it would of been better if any syndrome that he had, that he had more of a common one. One that the Speech therapists, dietitian, Physio, Occupational and all other specialists that deal with Darcy knew about. Our weeks are normally full of appointments. Ones that no other first, second, third or more parents have to deal with. One thing I am grateful for is I know no different, I am a first time mumma, and I am blessed that I know no different.
But thats when I started to, thats when I really noticed. I had a friend have a baby, a friend I totally adore and her son I am totally bestowed by. Thats when I really noticed his delays. He is only 8 weeks old now and Darcy would probably be at the same stage as him. The thing is Darcy is probably not meeting half of what his little best mate is. Sometimes I feel like I haven’t been doing enough, I feel like I am letting Darcy down. The questions that go through your head is am I doing enough for him? Am I putting in enough physio a day? Tummy time, is it enough? Do I let him sleep too little or is it too much?
His head is flat on one side, but I try my fucking hardest to keep him off it. As I sit here typing this i am close to tears, oh who am I kidding I am in tears. The medication I give him daily…….is it helping or is it just another thing that one day will cause another problem.
I received a letter from the surgical specialist the other day, it said that they do not wish to bring down his testicle, it stated that because they are unsure of his life expectancy due to his ?cornelia de lange synderome diagnosis. That in 9 months if he is still around they will review Darcy and see if it is necessary as he may never have a mature use of it. Lets not take into account that Darcy may just live to be a teenager, yes he may not need them as he becomes older, but I am from a medical background and I know the complications that can arouse from a testy not being brought down. What a nice thing to receive in the mail.
I know this may seem like a bit of a down blog, but its really not. Its a real blog, it is a snippet of what Darcy and I have had to face, the daily struggles of everyday life. The struggles that every parent has to face.
I may have a baby that has a syndrome, but at the end of the day I am just a mum. I am just like all you other mummas out there. I get up in the morning and just like all you amazing mummas I put my baby first. Just like you, you will put your crying hungry baby before your first morning wee.
And I will always be grateful I never thought I would be a mum.
A little feel good to end this washy blog. Darcy has taken a real love for a snuggle toy, the other day I went to Kristas house with it, I had no idea where it came from this snuggle toy, but Darcy loves it. Krista went funny, said oh you are using it. I just went yeah, “like what you talking about girl.”
A year earlier I had a miscarriage, a year before I fell pregnant with Darcy I had fallen pregnant. Adam, Krista, Vye and I had gone shopping and they had brought quiet a few presents for my baby. They returned those presents, but right in the bottom was one they missed. They didn’t know if it was a good idea to give that present to Darcy. The present that Darcy loves, was the present that was for his older brother or sister.
Everything in life happens for a reason