life lesson…my son

living in the hospital

I found out I was pregnant with monkey #4 the weekend my monkey #2 ended all her meds for her first round of chemo. It was such a happy weekend. Things were good. Fast Forward 4 months and she was starting her treatment for her relapse. Devastation. Why now? I am pregnant. I have to stay multiple nights and weeks in a hospital bed being pregnant. Everything was 10 times harder because I was pregnant. Why now? My thought was and I was told this several times, maybe it is because your baby will be a match for her. There is nothing better than a sibling donor of bone marrow. None of my other monkey’s was a matched. Ok, this is why. I can handle this. He will save her.
December came, I was due five days after she was suppose to be in the hospital for prep treatment before transplant, I needed him to come early. I stayed home most of this month because I was so close to my due date and I new he would just come when I wanted him to. We needed to see if he was a match. He needed to save her.

hanging out in the hospital bed

He wasn’t coming. The 12th of Dec, came and went, the 15th of dec. came and went. I begged my doctor to start me early and explained the situation. She thought I was a nut job and said so to the other doctors. I switched doctors. New doctor said he could help me and he has done cord blood donation before. Thank the Lord.
I was frustrated beyond belief that my boy was not coming, does he not realize how important this was? I was assured by monkey #2′s bone marrow doctor they had a very good match for her, one that matched her all but one of the chromosomes. They couldn’t ask for a better one. But I was still hoping for my boy, this is why this all happened when it did. Because his cord blood was going to save her.
I was told by a good friend that my boy was nervous to come. I thought, why? This is his mission. He needs to come. My friend calmly said, he doesn’t feel your love. So then I tried, and tried. I talked to him, I said it was ok to come, I said private things while tears streamed down my face. He didn’t come. They ended up starting me two weeks before my due date. He did not come on his own. Luckily my good doctor understood my situation, delivered me and was able to get his cord blood sent to Primary’s. I felt a bit of relief.
They took blood from my son the day we left the hospital so they could test if he was a match. It was December 23. It was a holiday weekend, the blood sat in the truck until the 25 undelivered, it had not been tested. It was no good anymore. I was suppose to move into the hospital in 6 day’s and I was running my baby around trying to get his blood retested. I had to hold his head still while they got blood out of the only place they could get blood from, while he screamed.

A day later we get a call: “His test results came back as a match, but we are sorry to inform you they didn’t get enough cord blood to do the procedure.”
I was devastated. That was his mission. He was suppose to save her. I had to refocus my thoughts and feelings and after that day. Then a voice whispered into my mind: “he has his own mission.”

living at the Ronald McDonald house

We packed up and moved to Primary Children’s Medical Center oncology dept room 118. New born, post partum mom, and cancer patient. It will be ok, he will be a good baby. He has been so far.
He was not. He cried mosts nights. One night I got a total of 1 hour sleep between him crying, feeding, nurses, and sisters needs. I wished the nurses could help but it was RSV season and they just couldn’t risk spreading infection to cancer patients. I get that, but did not help my stress level. I finally told monkey 2 I needed rest so I was going to the Ronald McDonald house we had set up. Guilt overwhelmed me. She didn’t want me to go, but I needed sleep to function. It didn’t help, because he cried most the night.
He was suppose to be a good baby. I already had a lot on my plate. I was calling wonderful pediatrician, saying what can I do? Why is he crying so much. I didn’t eat broccoli, chocolate, and milk. He was just suppose to be good. Doesn’t he know how much stress I am under. I loved him, I did, but I had no idea why he was such a hard baby. I was exhausted.

cute smile

Fast Forward to almost 5 years. Things are great with monkey#2, she survived, she is doing so well! We move. But Monkey #4 is still my most difficult child. He won’t go to church activities with out holding onto me or dad. He won’t play at anyones house. He and I have arguments about it constantly. There are tantrums. Even dad looses his temper. What is wrong??
This summer I have another whisper in my ear. We tell monkey #4 of our love, we spend time with him, but when we ever tell any of our other monkey’s we love them, he always says, “What about me, don’t you love me?” He doesn’t feel accepted by you, the whisper said. His whole beginning of his first year of life still has a presence in his now. He had a big responsibly in life, that I gave him, he should not have had to carry. I needed to show him I accepted him. So when a tantrum started, I decided to grab him and hugged him. I sat him on my lap and rocked him, and told him it was ok. I did this multiple times, kissed him on his forehead and said,”I love you” set him down and off he went. Tears gone.
I now get comments about his transformation of what happened to him, he is a different little guy. He will go willingly into church, I didn’t even have to take him into preschool his first day. He went and played with a neighbor boy without tears or argument. The mother even noticed and said how much he had changed. He even played soccer at the end of summer when at the beginning of spring he would sit in the truck crying at tee ball, not wanting to play.
I had no idea the feelings I had when he was in the womb, and the first year of life would affect him so much. It is uncomfortable for me to reveal some of the thoughts I had about him at that time of my life, but what I learned I need to remember. It was a huge life lesson. He is more confident and our relationship is changed forever.

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One Response to life lesson…my son

  1. Carol says:

    I have been pondering this sad post…….and I got to thinking that maybe you THOUGHT Rhen’s “mission” was supposed to be to give Chloe lifesaving cord blood…….but maybe the Lord wasn’t in a hurry to send him because He knew that they already had a transfusion that was sufficient. After looking at Chloe’s smiling face in the above pictures, I have been wondering if Rhen’s REAL “mission” was to bring Chloe a measure of joy and happiness during her darkest hours. Something to take her mind off her own pain. Something to wake up for each morning and something to give her hope for the future. It was a traumatic time for all of you, and especially traumatic for a little baby to be born at a time of such incredible stress and tension, when it should be a time for quiet, soft, loving cuddles. Sounds like he just needs extra reassurance that he is loved. Children love to hear about when they were babies. Hug him and tell him how much you ALWAYS wanted a little boy, and how happy you were when you found out he was going to be part of your family. Tell him how cute he was and how much you loved him, and how you had to stay at the hospital with Chloe and how happy she was to have a little brother. Try to point out the happy things and not dwell too much on the stressful things because you don’t want him to associate his birth with unhappiness. When he is older, he will be able to separate the two more easily.

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