会報10号 利用者の声その1


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My son has a congenital heart defect. He had his first operation when he was 6th month old for pulmonary banding and before he reached his first birthday he already undergone 5 operations. Looking at his tiny body, with tubes and needles, mixed emotions and lot of questions popped up my mind….why him?, after these operations what will happen next?, as a mother what can I do to ease his pain? And I even wished that it was me instead of him lying on that bed. All of those 5 operations are not even for his real heart problem. After spending 9 months stay-in in the hospital, we were informed that he need to have a oxygen support 24 hours 7 days a week. And his heart operation will be conducted when he reached 15 kgs.
At the age of 3, he finally gained 15 kgs. Heart catheterization procedure was conducted and from that result, schedule of his operation will be decided. They first informed us that he no longer needed his oxygen-support. Even though my son already reached the target body weight it seems that they cannot decide when to fix his heart problem. After few more months of waiting, they finally informed us that they will refer us to other hospital so we can get second opinion. The hospital told us that there`s a cardiologist from Kanagawa Children`s Medical Center who already handled same case with our son. They referred us to Dr. Asou of the said hospital. During the consultation with the doctor, he explained to us how the heart operation will proceed, what are the pros and cons. And at that time, a great feeling of hope immersed in me. We decided immediately that we will go for the 2nd opinion and the heart operation will be conducted by KCMC cardiologists. We were then given print outs about the hospital and together with it is a pamphlet “House of Lila” where parents of KCMC patients can stay.
The first day at the hospital, we made a quick stop at the House of Lila and signed contract for few days of stay. The facilities are good and the place is very clean. And what I like most is their system of sharing, not only the facilities but also responsibilities. I remember my home in Philippines, I remember my mother and all those reminders regarding saving energy. Oh, a good feeling that I am not far from home. After the visiting hours at the hospital, I went back in House of Lila and as I took my rest drinking a cup of coffee I had a chat with Mrs. Saeki and from that time I felt at home, there was a certain feeling of a sudden pouring out of emotions I had as a mother, my fears and worries. I let it out as if I am talking to my mother or to a friend. I never mind at all that I am talking to a person I only met at that time. There is a feeling of openness, even though I am not so good at Nihonggo I found myself talking and talking and I can feel support, understanding. It’s been a long time since I poured out myself this much. “House of Lila” is not just a place to stay overnight; it is just like a home…the real meaning of “a home away from home”, a place to recharge, to renew oneself physically and emotionally to be ready for the next day. When I prayed at night I prayed with a thankful heart because I know that God led us to KCMC for my son and God led me here in House of Lila to remind me that He always takes care of me.
I cannot do anything much for the House of Lila but I can give a prayer that may all the volunteers and persons operating House of Lila be of good health, be far from any sickness and more years to live so that they may continue spreading the warm of their care and love to those who are in need.
More power and God bless.

私の息子は先天的な心臓疾患を持っています。 息子がまだ生まれて間もない生後6ヶ月の時に肺動脈絞扼のため最初の手術を受けました。手術はそのあとも続き、息子が最初の誕生日を迎える前までに合わせて5回もの手術を受けました。チューブにつながれ、注射針がさされているその小さな体を見て、「一体どうして私の息子にこんなことが?」、「この手術が終わったらはたして次は何が待ち構えているの?」、「母親としてこの子の痛みを和らげるために一体何が出来るの?」など、複雑な感情と多くの疑問が私の心に浮かび上がってきました。「出来ることならこの子に代わって自分がベッドの上にいてあげたい。」とさえ思いました。5回も手術をしましたが、それは心臓疾患自体の解決のためではありません。9か月間病院で過した後、お医者様から「常時酸素吸入装置の助けを得る必要がある。そして、体重が15Kgに達するまでは心臓手術は無理である。」との説明を受けました。


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