Dearest Kharece,
In a few
days, you will be turning one year old. We thank God for a year He has given
you and you to us. It’s true what other parents of Down syndrome children blog
about. We wish we had known from the start that it is not so bad after all.
Kharece, we would
like to thank you for a lot of things (we hope you will grow to be able to read
what we write here anyway):
Thank you baby for bringing joy to our family. It sounds like
a cliché as every child brings joy to a family. But the joy you bring is a
little different, more intense, more impacting. Your contagious smile (even if
we are still awaiting your first tooth) always reminds us of rejoicing with
what is at the moment, with what we are and what we have, and to be cool even
when everything seems to be so stressing.
Thank you baby for not being so fussy. We leave you to play at your walker or your crib while we cook or wash clothes and you seldom mind. You only shout and let us know when you think we should have been done. Even how you let us know make us giggle with joy.
Thank you Kharece for the lovely stare that melts, and that thing you do with your face when you are about to cry. It causes us to try and bully you more, but again even such moments are joyous for our family.
Thank you Kharece for daily reminding us of God’s sovereignty. You are our greatest shock in life. Yet you are our greatest reminder of His sovereign will, of the reality of His presence, and of the truth of God’s peace. How can we not serve Him more?
Thank you for trying your best. We think you are trying your best. While your milestone schedules differ from your "kuyas", your small accomplishments are worth looking forward to. If we can only take away that extra chromosome from your cells, we would. Not so that you will achieve the milestones the way other children would, but to shield you from future questions from a society that has a different normal. Our prayer is that we will be able to teach you the proper behavior or reaction when the inevitable time comes when you will be compared to the “normal”. The PWD world will make it sound better, that you are not “abnormal”, but you are “special”. I say, you are not a normal child indeed, but that doesn’t make you less special.
Kharece, our
journey will be long but one year into it and we are confident that we have Help. Our first year was not bad. The worst so far was that time you were so hurt
nine times when you were being admitted to the hospital for Pneumonia and they
were trying to insert an IV through your chubby hands. Your Dad couldn’t stand
your cries and had to distance himself. We resolved that time that we will try our best to prevent you
from being hospitalized again.
As we celebrate your birthday, our hearts are full with thanksgiving to our God through our Lord Jesus Christ. We thank Him for many things concerning you:
We thank God for giving you a healthy heart, a healthy thyroid, good swallowing and eating ability, and hopefully sustained good ears and eyes;
We thank God for sustaining your physical strength so far. At one year, you cannot pull yourself to sit nor stand by yourself yet. Hypotonia (low muscle tone) and ligamentous laxity (looseness of the ligaments that causes increased flexibility in the joints) are how the medical world call those characteristics and they are associated with your extra chromosome. Nevertheless, you can sit by yourself for a longer time now, and can push and scoot yourself backwards and that is enough to thank God for. We thank God also for teaching us the virtue of patience.
We thank God for your mental development. We do not know how much you understand or what stock of knowledge you have as of now but we are glad you know your blood family somehow. You love your "kuyas" and they adore you. We thank God for the small things you can do like clap your hands when we ask you to, or respond with some syllables when we converse with you.
We thank God for Hope Presbyterian Church family and the universal church family He brought us into. For all our shortcomings and the weaknesses of the church, the brethren have been very very supportive of you, us, since you were born. Thank God for our, your near and far spiritual family.
We thank God of course for dear blood family and friends who from the start showered you, and continue to give you, us, love and prayers. But as your Uncle Winslow would tell us "mamingsan ti salamat". Kharece, God willing, may you reach to a point in your mental capacity, when you will be able to appreciate and thank God for His grace and blessing of good family and friends. Mama and Daddy have not perfect but great parents, a good bunch of siblings, and real friends who will let you in when you knock on their doors.
Finally, how we so thank God for what He is accomplishing in us your parents because of or through you. Our earnest and continual prayer is that by His grace, you will grow to give only glory to our Maker and accomplish your purpose, just as we try to continue to find and accomplish His purpose in us by giving you to us.
Happy birthday our dearest Kharichay, Khayen, Kharece Ayen. We love you so much.
In Christ,
Mama and Daddy
11 For I know the plans I have for you, declares the Lord, plans for welfare[a] and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. 13 You will seek me and find me, when you seek me with all your heart. (Jeremiah 29:11-13 ESV)
Kharece at 10 mos (photo by Tita Betty Listino)
