Friday, March 21, 2014

This is for WHS Mommies too


Found this video, "Dear Future Mum",
made for World Down Syndrome Awareness Day  (March 21st) .

It's message  hold's true for us too, the parents of individuals with Wolf Hirschhorn Syndrome,
most especially to the new mommies and the mommies to be of children with 4p minus. 



I really hope this video finds you.  
It will give you HOPE!



I somehow cannot find a way to embed the video onto my blog, 
but the picture is linked to the video. 
All you need to do is click it


April 16th



For all of you who want to be in the know, Wolf Hirschhorn Syndrome (WHS) is the 
deletion of the p-arm of the 4th chromosome, WHS is also known as 4pminus (4p-).

Isabella may be lacking some genetic material, 
but her real story, goes beyond what is dictated by science.  


She may be a chromosome arm short, but she most definitely has an overabundance of AMAZING!  




April 16th is now designated as a special day to create
Wolf Hirschhorn Syndrome awareness.

So now we have birthdays, milestone days, AND April 16th just to celebrate Isabella's AWESOMENESS!



Tuesday, March 04, 2014

My Daily Prayer


I remember reading this prayer daily during the first two years since Isabella was diagnosed. This is what helped me take things a day at a time, because when things get too overwhelming, prayer was my comfort to help get me through the day.

In my daily praying, I have learned to let go and pass on some of the responsibility I felt to HIM. The burden is lightened in accepting that God is in charge and trusting that he is with you, and to take on all of it was intensely overwhelming and defeating. I have no control of what there is/was and there was comfort in knowing that I can “Cast your burden on the Lord . . . . (Isaiah 9:6).

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Lord God,

I am here today to praise and thank you for the challenges that you give me. I know that your plans for providing these trials goes beyond teaching me something… your plans include changing me into something, molding my character so that I may become a better version of myself yesterday.

Lord I praise and thank you for challenges that you have prepared for me daily. I trust that your plans are good, and that your will is always good. Lord I apologize for having finite understanding that sometimes I struggle in accepting things as they are. I apologize for missing out on the little blessings and miracles every day because I focus too much on what is not there. I am sorry that sometimes I overlook the good things and that I take things for granted. Remind me everyday Lord that there is always something to find that I can praise and thank you for. That there are things, no matter how small, that I can be grateful for. Teach me Lord to appreciate the things can sometimes be guised as challenges because good things are hiding behind these trials and that all that I need to do is to persevere and be patient.

Lord, I am also here today to lift up to you my fears, my apprehensions and my doubts… Lord I lift up to you all the concerns in my heart.

Lord I lift up to you my child. I wish for her to grow up happy and loving. Let her know and feel that she is loved because she is. Grant her health, and be with her in every seizure, surgery, doctor’s appointment, medical procedure, etc. Be with her in her daily tasks, most especially the ones that most people find simple to do, but takes a lot for  her to accomplish. Guide her and hold her in your hands. Give her an indomitable spirit so she will keep trying her best and push herself beyond her limits or the dictates of her disability. As for me Lord, help me to just love her more whenever I find that days are challenging. Shower me with more love for her because there are definite moments that I need to feel more of that.

Lord I lift up to you my son. Give him compassion so that he may be able to process his own understanding of what it is like to be a part of a family with a child with special needs. Guide him through his own journey into understanding and acceptance. Grant him patience and the words to help him communicate and educate his peers. I wish that he grows up knowing that he is loved too and that he is never neglected nor forgotten whenever the focus is on his sister. Grant him more love for his sister and from us and may he grow up as his sister’s advocate and protector.  

Lord I lift up to you my spouse. Make him understand my many complicated emotions. Help us connect and communicate that we may always find a middle ground or compromise for the tough decisions we have to make and for the resolution of conflicts that we will face. Grant us lord the gift of finding quality time for each other and be able to always reassure and comfort each other. Remind us Lord everyday of the love that we have for each other prior to having our children. That the love is still there though it may be hidden under a pile of chores, errands, and worries. Lord let us feel that love every now and then to give us a boost or a nudge when we most need it. Lord we pray that you help us keep our relationship strong because we will need each other for the many other trials ahead. Keep us together as we weather the storms.

Lord I lift up to you the people around me, that I can trust them to be understanding of my child, and that the people that work with her have genuine care for her. Grant the doctors, nurses, teachers, and the specialists that work with my child the knowledge and education that is necessary to help her reach her goals. I pray that they are as invested as we are in our child’s development. Grant them compassion for us too that sometimes daily life gets in the way and we may not be able to do all. Grant them patience, and resourcefulness and creativity and compassion as they work daily with my daughter. I pray for their health and bless them lord for helping us through this journey of raising my daughter.

Lord I also lift up to you myself. Grant me your grace so that I can keep on going. Help me to always find strength within. Take out the anger, the bitterness, the envy, the self pity, and the negativity in my heart. Take out the doubt and teach me to fully trust your will. Remind me everyday Lord that you will never give me something I cannot bear. Replace all these overwhelming emotions with feelings of joy and acceptance and contentment…. of feelings that evoke faith and hope. Nourish my spirit with wisdom and courage to help me to keep on going in the face of challenges. Grant me perseverance. Grant me peace of mind. Grant me a joyful heart.

Lord, for all the other things that I have forgotten to praise and thank you for, I say thank you. For all the things that I have no words to lift up to you, I offer to you. My heart is in your hands dear God. I offer it to you wholly. Hold it in the palm of your hand. Teach me God to be still in the midst of chaos and trust that that is exactly when your best work happens. Lord let me know that you are there all the time and that you will always, always carry me through because you are God.

All this I ask in your name.


Amen.

Tuesday, February 04, 2014

Wait, There's MORE!


In terms of speech development, I have mentioned in a previous post that Isabella does sounds and recently she will nod her head for “Yes” and shake her head for “No” and I pretty much feel that the use of Yes and No has been consistent. She also seems to understand some "signs" we have done with her.  But, in terms of a communication output, all we have are sounds.


video

However, in terms of conveying meaning, we are still lost, but like all other things “Isabella”, we believe that eventually "conveying meaning" will find it’s way somehow.

BUT… here’s the best highlight in terms of output, she finally is using the sign for “more”. See our little angel use sign in the video below.

video


Thank you Isabella for giving us a reason to appreciate "more" things, every single day.