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About Molly Dube Kachukiwa

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My Angel Has An Extra Chromosome- Part 7

Baby Care, Occassions April 6, 2016

The arrival of Zia brought anxieties, fears of the unknown but in all that, it also brought hope! Zia has resuscitated in me a bud of love and care. She has strengthened me spiritually and
emotionally. Many fears have been conqured through this little gift. I learned to accept, for God gave us the ability to procreate and not to create so what God has created is faultless. It was
God’s perfect will to give us the priviledge to have Zia in our lives and we thankful for that. My prayer is that God continues to guide and bless us, her family so we have the ability to raise her
such that she may grow into what God wants her to be. Sometimes I feel as though I am not doing enough for her but I know I have a lifetime to continually show my love for her. -Granny Cabbie

Dear Zia
From the moment I knew that I was going to be an uncle, I was happy. Your presence in my life has changed me a lot for the better! When I think about you Zia I get happy and determined to be a
better uncle. You have given a new purpose to this life and I am a happy man because of you nana. As we know that we are all unique but your uniqueness is more appreciated. It has taught us to put others before ourselves and taught us to think of you before our own desires. Seeing you happy makes it all worth while! It’s a blessing to have you in our lives. I love u my baby, just the way you are.
Love malume- Uncle Lucky Dube

When I learnt that my sister’s child has down syndrome a lot of negative thoughts came to mind. How was my sister going to manage with a special needs child? How would she cope? Why had God chosen my sister out of all the women? Why her??? How did the baby look? I must admit that all this was because I did not know much about DS… I got on a flight and knowing that the whole family would be waiting for me when I landed, including Zia, made me a little anxious. I did not know what to expect and how to react. It was a delicate situation. When I landed I couldn’t believe my eyes. She was this beautiful new life, a true bundle of joy! Beautiful and so adorable. I took over my sister’s motherly duties as I spent time there and quickly learnt that despite having DS, Zia was very normal.I bathed her, fed her, played with her and she responded well. Like any other child would. she wud smile when she was happy and complain when she did not like something.. not to mention all the times we went out and people wouldn’t stop complimenting her beauty. People who did not know about her condition. That made me a proud aunt. My baby made me realize that DS means developing at her own special pace and that’s perfectly fine. She is a blessing to her parents as they are the chosen ones by the Lord. God chose them for He knows she is safer with Chris and Molly. In that home she is getting the love He wants for her, the love she needs. God knew that Zia needed a patient mother! A golden hearted mother. She needed somene who she could look up to. A mother who would not take her condition as a sickness. I’m happy to say that my sister is that one of a kind mother and Zia is in good hands! I thank God for blessing my sis. -Aunty Sarah Dube

Being Zia’s caregiver is a big responsibility which I perform with all my heart! It means that I must take extra special care of her. I play with her and make her feel happy. I feed, bathe and
change her properly to make sure she is growing well and that she is always looking smart. Her mother has taught me how to take care of her well so that even when she is at work she knows her baby is safe and happy. I also know how to tell that she is not well so that I rush her to the hospital but she is a very healthy baby. Above all this, I give her love that every child needs. – Aunty
Agness

Happy Birthday Zia

Occassions March 15, 2016

Dear Zia.

Now that you are one year old, mommy couldn’t be happier. God has blessed us with you. Though we didn’t expect things to turn out the way they did, we are ever so grateful that you are in our lives. When I had you and doctors told me about your special extra chromosome, I feared that you were never going to have a life, that you would always be that floppy baby that I held in the hospital room. Lack of knowledge almost destroyed me and that would have negatively impacted my ability to look after you. But I am happy to say that didn’t happen. I looked into your eyes as you gazed into mine and pulled myself together because I knew that you depended on me and I was determined never to let you down my princess!

I want you know that you are special not just to me but to daddy too. I know you will face challenges because you’re different but you should never let negativity bring you down. Always know that there is nothing wrong with you. You are not disabled but able in your own special way. Imagine if we were all the same? Life would be quite boring wouldn’t it? Our differences are what make us special and you, my baby, are irreplaceable! There is only one of you so never wish to be like anyone else. Work on being the best version of yourself and not a copy of someone else because it’s you we love with all our hearts! You are beautiful and so full love. And just as you have taught me that I am stronger than I ever thought I could be, there may be times that you will need to be strong for yourself when you face challenges. Don’t forget that you are never alone. Mommy and daddy are here for you!

Each time you wonder what life means, remind yourself that life is breathing in and out and having a heartbeat. God gave that to you but the rest is within you. You choose how you want to live your life. What you want to achieve and what will bring you joy. God sent you from heaven to earth so that you can be free to live. So do not let anyone or anything especially being different, limit your quality of life. Reach for the stars and I promise I will do all I can to give you the support you need to achieve your goals and to be truly happy. I know as your mom, I will make a few suggestions, give advice and a few requests, well maybe a lot, LOL. That’s because I love and want the best for you but I will never limit or hinder your progress! Remember, God didn’t send you here alone. Besides your daddy and I, you also have the bible to guide you and to encourage you.

With all the medical advancements around us, I am certain that there is nothing that Down syndrome can throw at you that cannot be dealt with to ensure you live a long, fulfilled life premarin pills. I don’t mean to to brag but to remind you how blessed you are because at your age more than 50% of babies with down syndrome would have been through about 3 heart operations or been in and out of hospital several times for one issue or another but you have been healthy and strong! As I watch you grow, I am so encouraged because I know you have a bright future ahead of you.

You were born an angel. I want you to live like one. An angel loves unconditionally, is always joyful, is beautiful inside and out and is always strong. An angel gives without expecting any rewards and reaches out to people in need. I know your life will have a positive impact on everyone around you. You may be too young to realize it right now but you have already changed my life for the better. I love you more than words can ever express!

Happy birthday my Zia Olerato Kachukiwa. Here’s to many many more!!!

Lots of Love

From Mommy

My Angel Has An Extra Chromosome- Part 4

Baby Care, General February 15, 2016

This article is about Zia’s developments so far and how proud I am of her.

Our challenges started the very day she was born. Zia was unable to latch onto the breast which meant that I could not feed her effectively. Initially I thought it was because I was a first time mom and was just not doing it right. Lactation experts and nurses at the hospital tried to show me the ropes but it became apparent that the set back was being caused by my baby girls muscle tone which was very poor. She was so floppy and the way she could bend so flexibly scared me quite a bit. I was worried she would hurt herself. At this point we were unaware that Zia had DS but the doctors had their suspicions. I expressed milk and bottle fed her for the first few months premarin tablet. She had no problems with the bottle and it was a blessing in disguise because it meant her daddy could also feed and bond with her in that way.

Zia was born with a big fontanel and now it has divided into 3. Doctors said to give it up to 3 years to close completely where typical babies have a small fontanel and it takes about 18-24 months to close. This meant we had to be extra careful and to make sure we protected her head all the time as she was in a fragile state. It took some time to balance protecting her and truly being comfortable to play with her without the fear that we might injure her but seeing her smile and hearing her cackle when we did play made us more relaxed and less uptight. She was still just a baby after all. Needing protection, yes, but needing fun time just as much!

DS babies have weak immune systems and so at 4 months I introduced organic porridge that I bought from the pharmacy to boost her immune system as well as to encourage her growth. I made the porridge very runny so that it would be easy on her digestive system. I am happy to say that she has now fully transitioned to solids and like every other baby, she can be picky about new tastes and flavors but she does love her food. Read the article Fussy Eaters for ideas on how to get your little one to eat if you have been having trouble with that.

Round about 4 months is when typical babies start to learn how to sit but my angel was still working on strengthening her frame so she wasn’t ready for sitting. Support group reminded us that Zia would reach developmental milestones in her own time so we were patient, we prayed, continued with baby massages and we started going for physiotherapy. Between 6 and 7 months, she was able to sit although learning forward and eventually rolling over. This was a sign that she was getting stronger. By 8 months she was sitting all on her own. What an achievement!

Zia is 11 months old now and getting stronger by the day. She enjoys her physiotherapy sessions and we adore our therapist. She is very patient and loving and always has a positive attitude. She has had many patients in the past and their success stories encourage me because I know that there are ways that I can help my daughter and that with time she has a chance of growing to become a fully independent young lady.

Since 5 months she has been showing signs of teething but no teeth yet. She has developed her own version of crawling which is laying on her tummy and using her arms to pull herself forward. She does however, stand holding onto something with one hand, playing with the other. The important thing is not to focus on the development of her age mates around us but to celebrate her achievements. I love watching my little angel grow and I look forward to sharing more of her achievements with you. Chris Brown sang,

We’ll crawl ’til we can walk again. Then we’ll run until we’re strong enough to jump. Then we’ll fly until there is no wind. So lets crawl, crawl, crawl…

Crawl my darling Zia. One day I know you will fly!

My Angel Has An Extra Chromosome- Part 3

Baby Care, Parenting February 2, 2016

On my page l once wrote that it takes a a community to raise child and it takes the very same community to raise a child with special needs. Every parent in this position needs support and yet what they usually get is pity and weird looks and no one deserves that. It could be out of ignorance about the condition or just simply not knowing how to respond and that is why I have decided to share our experiences and hopefully this will raise awareness on down-syndrome and make a difference.

Support groups provide a lot of help . They taught us how to care for our little girl by massaging her to help her physical development along, the kind of toys she needs, how to carry her with her legs are crossed because she is very flexible so that helps them stay in place and keep her comfortable. They also teach us how to tell people around us about the special newest addition to the family. To help them understand the difference between the special one and typical ones and how best they can help to make your angels life as normal as possible. I am sure you are wondering why am I saying typical when referring to children without DS instead of normal. Well we are all different and unique, so normal doesn’t exist to me. It is a very relative term. Although DS children require special attention, it is also very important for them to be treated like all other children when it comes to issues of discipline. That means having rules just like everyone else and being told NO when necessary. If they need a time out or naughty corner for breaking rules then that’s what ought to be done so be firm when necessary. If you don’t discipline that little one you are going to have a child that is out of control. I wouldn’t have known that if it wasn’t for the support group. It’s great how people who have gone through the same situation avail a wealth of wisdom for us  who are new to it. Having the knowledge equips us to raise her better.

Special little ones need love, they are very sensitive so patience is important. I took a 7 month leave after my baby was born and in this time we developed a special bond. When I had to return to work, I prayed for a helper who would be just as patient and loving as I was with my daughter and God sent me a guardian angel. I work as a chef and that means long hours but thankfully I get to spend all morning with Zia and by the time I come back from work she is fast asleep but I am assured that she has been well taken care of in my absence. That gives me peace of mind. Join me next week for Part 4 of this wonderful journey.

 

My Angel Has An Extra Chromosome- Part 2

Baby Care January 15, 2016

After I found out that my daughter has an extra chromosome I was crushed. Fear and lack of understanding about the condition made it worse. I was unsure about what kind of life and future my daughter Zia had laid ahead of her. When I was pregnant I had read a lot about baby’s developmental milestones so having to erase those expectations from my mind was very difficult but necessary as accepting that my daughter would develop at her own pace was the first step to embracing her condition. It took me  a while to seek help because I thought no one would understand how I felt. Initially I thought only people over a certain age had babies with DS (down-syndrome) so I was very confused as to why it had happened to us. I was 23 and her dad was 30 when we had her. We were also very fit and healthy. I then started reading a lot about DS looking for answers. It was also at that point that I got the courage to seek help. I contacted the  Down Syndrome Association and from that time they have been supportive. Here is some information that they gave me.

DS is a genetic condition caused by part or all of a third copy of chromosome 21. It is typically associated with growth delays and intellectual challenges. The extra chromosome occurs by random chance and so the parents are typically genetically normal though they may carry it in their blood. If the father’s blood contains it then there is a 12% chance that the condition will happen again in his other children. If the mother has it then that number trebles to 36% so it is important that these tests are done before planning to have more children so as to make an informed decision. We went for these tests and none of us have it and so while there is a chance that it may happen again, those chances are very small.

DS affects people on different levels, severe, mild or balanced. If it is balanced then it is present in your blood but does not affect you at all. Although there are higher chances of a little one being born with down syndrome the older their mom is, the condition is really very random. It happens in about one in every 1000 babies born each year. There is no prevention and no cure and while it is possible to find out if the baby you’re carrying has DS through prenatal screening followed by diagnostic testing, this is not standard prenatal testing procedure. There are also no symptoms that may prompt someone to get these tests done while they are pregnant. Most people find out after baby is born like we did.

After getting in touch with the DSA we were encouraged to join a support group of other parents who have special little ones like Zia. This has helped a lot as we get counselling and advice. I’m happy to say that I am no longer afraid nor uncertain about my daughter’s future because I know that with proper help she can live and enjoy a good life.