We stayed at the Ronald McDonald House three years ago.
We are immensely grateful to the House staff and volunteers who always extend a heartwarming welcome.
When I left for the hospital before sunrise in the winter, it felt as if the flowers in the garden were gently seeing me off. And when I came back late at night, I always said “I’m back” to the Ronald statue sitting in the front entrance hall. The statue of course did not say “welcome home” in return, but I felt as if he did. The House was somewhere where I could feel at home.
My second daughter (Momoka) was diagnosed with craniosynostosis. Her first surgery was performed at a university hospital in the Kansai area, while our family lives in Gunma. Accordingly, for close to two months I stayed in a cot by my second daughter’s bedside, while leaving my eldest daughter (Erika, 2 years old at the time) at home. I still remember the emotional pain of not being able to see my eldest daughter and being unable to rest or relax at all 24 hours a day with the sound of the monitor above my head, nurse calls, the sound of children crying, hospital rounds every two hours, and other such activities.
My third daughter (Honoka) was born after the doctor who operated on our second daughter had moved to a university in Kyushu, and around the time when we were considering changing the yearly outpatient visit from the university hospital in Kansai to the National Center for Child Health and Development in Tokyo. However, similar to Momoka, Honoka was diagnosed with craniosynostosis. She suffered an apneic episode 12 days after being born and was admitted to various hospitals such as the Gunma University hospital and a general hospital. There were limited cases of craniosynostosis in Gunma, and therefore we decided to take both our second and third daughter to the Center of Child Health and Development, where their medical conditions would be comprehensively evaluated.
While Honoka was scheduled for surgery, we thought that Momoka would receive a brief examination since we were told that “she would not need to undergo surgery again” after her operation at the university hospital. However, the doctor told us that “Momoka should also undergo surgery. She has a hole that is larger than a 500-yen coin; we cannot assume that she will be able to produce any more bone on her own, and it will be dangerous to leave the hole open”. Thus, the decision was that both would undergo surgery. The thought had never occurred to me that both of them would undergo surgery.
After that, I frantically stayed by their bedsides with the desire that “they both get well quickly”. I was always very, very busy. They had different hospital rooms, and so for example I would be breastfeeding Honoka when the nurse would come for me, saying “Momo-chan is asking for you”. There were too many things for one person to do, and if possible I wanted Doraemon (cartoon character) to provide me with a robot version of myself.
During this particularly busy time, the Ronald McDonald House was one large factor in keeping me bright and positive during our stay at the hospital. Being able to rest in a hotel-like bed rather than a hospital cot and stretch my legs in a large bathtub helped soothe my exhausted body.
I was also excited to be able to meet former Prime Minister Abe. He happened to visit the House during our stay, and my daughters also were permitted to leave the hospital, and therefore we were all able to meet him together. That special experience seemed like a reward to us for our hardship and effort and was very encouraging.
Another particular memory is when Honoka was hospitalized to remove the extender from her skull. My eldest daughter Erika always stayed home when her sisters were in the hospital, but happened to be on summer vacation and therefore was able to stay at the Ronald McDonald House together with my second daughter Momoka. Children are not allowed to enter the hospital ward and so the children were only able to see each other through a pane of glass, but that weekend the primary doctor gave permission to stay out overnight so three children were able to spend some time together at the House. Ronald McDonald House helped our family emotionally as well.
I also remember when Momoka, who had strabismus, was examined by the ophthalmologist. The surgery for strabismus had been performed and I had been envisioning a bright outlook in which we overcame one surgery at a time, when the ophthamlogist said “she has weak eyesight; let’s make her some glasses”. This was the first time I was told of “weak eyesight”, and I had a difficult time believing my ears. “Momoka has weak eyesight? She has weak eyesight!” That was all I could think about.
I returned to the House in a daze, where a staff person said “Welcome back. What’s wrong? You look pale”. When I heard those words, it was as if my suppressed feelings exploded, and I burst into tears without regard of my surroundings. The staff gave me words of encouragement. “Did something happen to your children? Have a good cry to calm yourself down. You need to be a cheerful mother in front of your children. Things will get better.”
Looking back, I think that at that time, I was completely overwhelmed with worry about Honoka’s upcoming operation. I was blaming myself for not giving them healthy bodies and driving myself into the corner.
Last month, Honoka underwent an outpatient examination and took her first 3D-CT since last year. The doctor also showed us a scan of her head before surgery, and we were able to see that her beluga-shaped head had changed to a normal shape. It was a very emotional moment.
Setagaya House provides accommodations to families from all over Japan and sometimes even families from overseas. Guests talk with other guests who have children suffering from similar illnesses, giving and receiving encouragement. Each and every guest has overcome a large number of challenges, and so their words can be very moving and sometimes provide helpful hints. As in my case, the support that the staff and volunteers offer to distressed families is very welcome and much appreciated.
The well-cleaned kitchen, dining room, and bedrooms are always comfortable and are budget-friendly, which is very helpful as numerous expenses are incurred during a hospital stay. It was because I stayed at the House during that most difficult time and received encouragement from the House staff and other families that I was able to look at things positively and keep a smile on my face in front of my children. I am very, very grateful. Thank you so much.
Erika is currently 9 years old, Momoka is 7, and Honoka is 3.
Owing to the relaxing House, I could take good care of my daughter.
We stayed at the Ronald McDonald House three years ago.