What do you know?

Have you ever found yourself in the situation where you missed somebody so much that you want to tell them all that happened while you were apart from each other? And have you ever been in the situation where you don’t know how to begin because so much has happened in whatever time frame? How did you handle that?

These questions, my dear readers/followers, is the situation I find myself in– so much has happened since April that I want to tell you everything! My journey with KEY, getting real with Debbie, the parents corner etc. The challenge is I don’t know how or where to begin. What I am going to do is let the ink lead me, so please bear with me if today’s post is a bit mixed mash of everything – I’m sure we will make sense of it together.

I mentioned about a week ago that I discovered poetry and my decision is in order to develop this new ‘talent’, I will share one of my poems with each post on this site. I entreat you to read, and read again and give me your candid thoughts. I appreciate every single one of you and promise to do better by sharing a post (with a poem) every two weeks.

October is a special month for many reasons; it comes after September and precedes November. It is the month in which I became a mother by holding my daughter in my arms 23 years ago! It is also the month for Down Syndrome and breast cancer Awareness – this is very important because this is the month that I unashamedly tout the achievements of my son in all the seven years of his life!!! And oh, he has achieved some KEY (all pun intended) milestones and accolades, among which is his stage performances, swimming prowess among others. And for the love of the ‘titties’ (breasts), we will celebrate October in all her glory by going bra less 💯🤗!

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What is Down syndrome, you may ask?

According to the Mayo Clinic, Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21 and that is why it is also referred to as Trisomy 21 (three copies of chromosome 21). This often leads to developmental and cognitive/intellectual delays. Down’s syndrome causes a distinct facial appearance, intellectual disability and developmental delays.

It may be associated with thyroid and congenital heart disease, delayed development, learning disability, short stature, or speech delay, brachycephalic, up slanting palpebral fissures, atlantoaxial instability, clinodactyly, congenital heart disease, excess skin on the back of the neck, glossoptosis, hearing loss, hypertonia, immune deficiency, low-set ears, mouth breathing, obesity, obstructive sleep apnea, palmoplantar hyperkeratosis, polycythemia, seborrheic dermatitis, simian line, or vision disorder

Treatment options include early intervention programs with a team of therapists and special educators who can treat each child’s specific situation, are helpful in managing Down syndrome.

If your child is diagnosed with Down syndrome, you may need the services of the following specialist at one point or the other of your child’s life, especially in the early days.:

• A pediatrician is your first specialist – they are able to link you to the other specialists (please note that your child will be referred to any of the pediatric specialists if the condition is detected early e.g. Pediatric cardiologist) you may require in the care of your child
• A cardiologist – will treat whatever congenital heart disease the individual may be born with.
• Dentist – individuals with Down syndrome tend to have oral health challenges hence it is very good to start seeing a dentist from very early on in their lives in order to maintain optimal oral health.
• Ophthalmologist; as stated above, individuals have vision disorders so the earlier you seek help (even when there appears to be no problem), the better
• Physiotherapy – restores muscle strength and function through exercise
• Speech therapy – supports individuals with speech and language problems
• Occupational therapy – supports individuals with developmental delays to improve daily living skills
• Primary care – you need a team of reliable primary care providers to help you prevent, diagnose and treat infections and diseases (it isn’t always you can go to a specialist)
• Genetic counseling – as a parent, you may require genetic counseling to help you understand your child’s condition and what the implications are on daily living, how to cope and referral for support – psychological etc.

I will appreciate your feedback on what you have learnt and whether you think this is a good place to start with telling you all that has happened since April, especially with KEY! Please remember, Down syndrome is not the disability, it our attitude to it! Please find today’s poem below

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In the moment

Right now

You are awake and alive

Breathe….

Breathe in fully

Feel the air

Today is a new day

Anything is possible

Believe….

Believe it fully

And let it be

Today is a fresh chance

To be, breathe

To believe, smile

To give, receive

To be in the moment

Today, look ahead

See and feel

The possibilities

Let them be

Be in the moment

Debbie M ©      29/09/2020